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What is The Specific Carbohydrate Diet and Does it Really Work?


What is The Specific Carbohydrate Diet and Does it Really Work?

The specific carbohydrate diet (SCD), is a very strict diet that removes all grains and certain sugars from what a person eats. The diet was developed in the 1950s by Sidney Valentine Haas, MD who thought it might help with difficult-to-treat digestive (gastrointestinal) conditions, including celiac disease, inflammatory bowel disease (IBD), and irritable bowel syndrome (IBS).

The SCD became more well known in the 1990s when Elaine Gottschall, PhD published Breaking the Vicious Cycle: Intestinal Health Through Diet, which is her story of treating her daughter’s ulcerative colitis.

Today, evidence that the SCD really works is limited. However, as long as people make sure to get enough nutrients when they follow this diet, it is not harmful. Some medical centers have even started providing support for people with these conditions who want to follow the diet—understanding that many want to try everything they can to improve these often-debilitating conditions.


Why Limit Grains and Sugars?

Dr. Haas, who originated the diet, thought certain carbohydrates, lactose and sucrose, were used as fuel by an overly high number of bacteria and yeast in the intestines. It is normal and healthy to have those micro-organisms, considered the microbiome, in our gut. Dr. Haas believed that an imbalance—too many of one or more types of bacteria or yeast—caused damage to the gut, which then increased the population of the problematic organisms. More organisms would then lead to more damage, creating a cycle of yeast and bacterial growth and damage to the gut.

One of Dr. Haas’ patients in the 1960s was the daughter of Elaine Gottschall. After the diet worked for her daughter, Elaine went back to school and earned several scientific degrees including a doctorate in biochemistry. She wrote Breaking the Vicious Cycle: Intestinal Health Through Diet, which is how many people learned about the diet.


What Is the Evidence Today?

All of Dr. Haas’ work was done by observing what happened to the children he treated when they did or did not eat certain foods. He and the parents knew what dietary treatment each child received and so it is possible that what they saw was what they hoped to see and not a real effect. That is why it is important to do what are called blinded randomized controlled studies, but these are very difficult to do for dietary treatments because someone participating in a diet study can see what they eat. Also, it is not ethical for people to be made to stop other treatments to test another, so many people using the SCD are also taking medication for their condition, making it hard to know if the diet is having a true effect.

The studies that have been done in recent years have been small (7 to 50 participants each) and were done after people had already been using the diet. In those 6 studies, 75% of children and adults with inflammatory bowel disease (Crohn’s disease or ulcerative colitis) who used the SCD did have improvement of symptoms and decreases in inflammation. However, in all but 1 of these studies, the research was done after the fact, which reduces the quality of the evidence for the diet. There is not enough evidence to say that the diet works or doesn’t work at this time. Based on what we know now, the most accurate statement is that the SCD may be helpful for some people with IBD.


What Is Included in the Diet?

The SCD is more than limiting carbs or being on a low-carb diet. There are very few foods that can be eaten at the beginning of the diet and some foods should be eaten only when certain symptoms are not present. As a person has fewer symptoms, they may be able to add back some foods. The foods that are acceptable on the diet include the following.

  • Nonstarchy fresh and frozen vegetables
  • Fresh, raw, or dried fruits
  • Fresh or frozen meats, poultry, fish, and eggs
  • Natural cheeses (ricotta, mozzarella, cottage cheese, cream cheese, feta, homemade yogurt, and dry curd cottage cheese)
  • Apple cider
  • Fresh squeezed orange juice
  • Nuts (but not seeds)
  • Honey

Starchy vegetables, including potatoes, yams, parsnips, chickpeas, and beans are not allowed. No lunchmeat or processed meat can be eaten. Condiments like ketchup or mustard are not allowed, nor is chocolate or ice cream. No bread or grains of any kind are included in the SCD.


Consult Your Health Care Team

It might feel great for a person with IBD or IBS to feel that they can “cure themselves” by controlling what they eat but giving up so many foods can be very challenging especially because food labels are not always accurate. If a person is able to follow the SCD, there is also a risk of malnutrition and unwanted weight loss. Not getting enough nutrients can cause serious nerve, muscle, and other health problems that can be painful or life-threatening.

For anyone considering the SCD it is a good idea to consult with a nutritionist about how to prevent malnutrition and other problems while on the diet. If you’re considering this diet, talk with your health care provider first. Self-treating your condition or making changes to your treatment without shared decision making with your team may have serious consequences. Your doctor may be receptive to the idea of the diet as long as you consult with a nutritionist and continue to have your health monitored carefully.

10 Things You Should Never Say to Someone with Crohn’s Disease or Ulcerative Colitis

What Not to Say to People with Inflammatory Bowel Disease

If you live with a chronic illness, you know how difficult it can be to explain your condition to others. This may be especially true if you look healthy and your condition is largely invisible, like Crohn’s disease or ulcerative colitis tend to.

However, these two forms of inflammatory bowel disease (IBD) can be debilitating and might even lead to life-threatening complications, per the Mayo Clinic. Ulcerative colitis causes long-term inflammation and sores (or ulcers) in the innermost lining of the colon and rectum, while Crohn’s disease can cause inflammation anywhere in the lining of your digestive tract, which often spreads far into affected tissues.

These conditions may cause a wide range of symptoms, including severe diarrhea, bloody stool, abdominal pain and cramping, reduced appetite, fatigue, and unintended weight loss. People with inflammatory disease often require immunosuppressive medication to reduce inflammation in the digestive tract and control symptoms.

IBD shouldn’t be confused with irritable bowel syndrome (IBS), which affects the large intestine and can cause cramping, bloating, and a change in bowel habits. While IBS causes discomfort, it doesn’t cause inflammation and damage to the intestines, per the U.S. National Library of Medicine.

People with IBD may face uncomfortable or unintentionally hurtful questions from loved ones, acquaintances, and even complete strangers. While you might mean well when chatting with someone who has IBD, it can be easy to say something that comes across the wrong way.

“A lot of people underestimate the severity of inflammatory bowel disease, and I think it’s because patients who have it don’t necessarily have outward symptoms,” says Christine Bishara, MD, an internist with a focus on gut health and wellness medicine in New York City.

Here are 10 things you should avoid saying to someone who has inflammatory bowel disease, with some background on why they might hit the wrong note.

1. “I wish I lost weight as easily as you.”

This may be a tempting statement to make if you try to highlight the positive, but many patients with Crohn’s or ulcerative colitis don’t intentionally try to lose weight. They may have a poor appetite, issues with absorbing nutrients from food, or simply can’t tolerate most foods at times, and might even need to resort to liquid oral supplementation to get their nutrition, according to UCSF Health.

“I have a family member with Crohn’s disease, and someone said to her, ‘I wish I could have diarrhea all day as well so I could stay skinny,’” says Dr. Bishara. “But these patients frequently lose weight because they are nutritionally depleted from not being able to absorb nutrients due to inflammation.”

Commenting about weight loss or eating habits in general can also come off as suspicious or judgemental. Samantha R. is a 23-year-old in Los Angeles who works in marketing for the online pharmacy Honeybee Health, and she experienced that suspicion when she was diagnosed with ulcerative colitis at age 21.

“There have been periods where I couldn’t eat anything, and some people made comments that I was too concerned with losing weight or following a fad diet if I wasn’t eating at a meal,” she says. “It was really frustrating, because all I wanted was to be able to eat a normal meal, feel like I was full, and not throw up from it.”

On the other hand, corticosteroids like prednisone are anti-inflammatory drugs often prescribed to those with IBD that can cause someone to put on pounds.

“Prednisone is notorious for causing weight gain,” says Dr. Bishara. “It can cause your face to look a little bloated and full, like a moon-shaped face. People will comment on that and say, ‘Oh, your face looks chubbier!’ but it’s really a side effect of the medications the patient is on.”

In short: If you’re talking to someone with Crohn’s disease or ulcerative colitis, there’s no need to mention their weight unless they want to speak about it.

2. “You’re tired again today? Let’s go grab coffee!”

The fatigue that those with chronic illnesses like IBD face is very different from the way other people feel tired after a bad night’s sleep or staying up too late.

“At my worst, when I hadn’t yet managed my ulcerative colitis with medication, I had what felt like two hours of being awake each day before I was really struggling to push through the rest,” says Samantha. “It’s really difficult to explain fatigue to people who haven’t experienced it, and to describe what it feels like when your body is shutting down.”

People with IBD may need to rest often, which others may mistakenly interpret as being lazy or  skirting responsibilities.

“There was definitely a misconception that I was being lazy or that I wasn’t self-disciplined enough if I was napping instead of working,” says Samantha R. “Even when people like my professors were really understanding, it was hard for me to ask for accommodations. I had my own self-judgment and felt like I wasn’t trying hard enough.”

3. “C’mon, don’t be antisocial!”

On that note, fatigue and other symptoms may cause someone with IBD to skip out on social gatherings. People might feel uncomfortable going out if they know they can’t eat or they’re worried about access to a bathroom. Try not to question their reasons for staying home.

“I’m not being anti-social, I’m not being lazy, and I’m not a buzzkill,” says Samantha. “That was a stigma I faced as my friends were adjusting to the fact that I had this condition. I simply could not act like others my age, who were going to parties or pulling all-nighters for classes.”

Plus, the person with IBD may already feel down about missing an event without added pressure from friends and family.

“A lot of people would tell me, ‘Why are you acting so old?’” says Samantha. “That was frustrating to deal with because I already felt like I was missing out on a lot. I was already beating myself up for not pushing through more, especially before my diagnosis when I didn’t know what was happening.”

4. “Maybe you just worry too much.”

Up to 40 percent of patients with IBD experience abnormal levels of anxiety, according to a 2015 review in the journal Clinical and Experimental Gastroenterology. IBD disease activity is closely linked to psychological symptoms like anxiety, which tends to be observed more during flares of IBD patients.

This may be one reason other people often blame IBD symptoms on anxiety. However, these are two distinct and different conditions.

“I’ve had anxiety for a long time, so when I first started having ulcerative colitis symptoms, they were often dismissed as me just being anxious,” says Samantha R. “I dealt with symptoms for four months longer than I needed to because everyone told me I was being anxious. I started believing that and dismissed my symptoms as made-up, when they were 100 percent not.”

While stress and anxiety can contribute to flares of inflammatory bowel disease, they do not cause it.

5. “You should really try to go all-natural.”

Someone’s treatment plan is very specific to them and the severity of their IBD — and it’s a conversation that should be reserved for them and their doctor.

“Some people have really mild IBD that resolves with dietary measures, while others need immune-modulating medications,” says Dr. Bishara.

Try not to give unsolicited advice on someone’s treatment plan because they’ve likely already discussed several options with their doctors.

“I work at a pharmacy and I still have people telling me I’m poisoning my body with prescription medications, when it’s the only thing that got me into remission,” says Samantha.

6. “You’re still having those symptoms?”

Although treatment can help Crohn’s and colitis patients reach remission and avoid relapses for their best quality of life, there is no cure for IBD, according to the University of Chicago Medicine. Symptoms can come and go and it’s common to have long periods of “normal” health with periodic (and highly disruptive) flares.

“I was able to get into remission after a year of medication, but it’s hard to explain to people — especially those my age who usually don’t have long-term health problems — that this is something I’m going to have to take into account for the rest of my life,” says Samantha.

IBD patients often weigh the choices they make with potential outcomes, even if they seem well or aren’t experiencing symptoms.

“Every decision I make takes into account whether or not something could be too much stress for my body and push me out of remission,” says Samantha R. “I’m constantly having to make these calculations and cost-benefit analyses.”

7. “How did you get it?”

The exact cause of IBD is still unknown. While stress and diet were previously suspected, experts now know that these factors might aggravate IBD but don’t cause it, according to the Mayo Clinic. Genetics or an abnormal immune system response to an invading virus or bacterium could play a role, but more research is needed.

“I think the majority of the population doesn’t know what having IBD means from a histological point of view, and many people probably just think, ‘Oh, whatever, they have a sensitive stomach,’” says Dr. Bishara. “When really, you’re having an inflammatory response.”

Asking someone what caused their IBD can make them feel as though they did something to bring it upon themselves, which is never the case.

“Someone might say, ‘It’s because you were anxious all those years,’ or ‘You didn’t eat healthy enough,’” says Samantha R. “There’s a lot of judgment there. Trust me, the person with the diagnosis is already judging themselves, because they suddenly have very different capabilities than what they’re used to.”

8. “You don’t look that sick!”

While IBD doesn’t always lead to visible symptoms, it can cause serious complications.

“A lot of times people don’t think patients with IBD are as sick as they really are,” says Dr. Bishara. “I’ve had patients who needed to be hospitalized for dehydration and other severe symptoms, even if they don’t necessarily look that sick.”

Depending on how well you know the person you’re speaking to, they may be willing to explain some of their symptoms to you. However, be careful about how you approach the topic, because some statements can come off as accusatory.

“You can be sympathetic and say, ‘I’m so sorry to hear that — can you tell me a little more about your symptoms?’” says Dr. Bishara. “I would say the majority of patients are happy to explain that, but perhaps not when they’re approached in a manner that’s suspicious or accusatory of the fact that they don’t look sick.”

9. “I know how you feel — I’m lactose intolerant.” 

You may be trying to relate, but even two people with IBD may have completely different experiences from one another, let alone two people with different gastrointestinal conditions.

“Someone with lactose intolerance has a completely different reason for having diarrhea than someone who has IBD,” says Dr. Bishara. The same is true for people with irritable bowel syndrome (IBS) or other gastrointestinal digestive issues.

When you’re lactose intolerant, you’re unable to fully digest the sugar (lactose) in milk and may experience diarrhea, gas, and bloating after consuming dairy products. Although it’s uncomfortable, it’s usually harmless and can be treated with a low-lactose diet, per the Mayo Clinic.

Whether you have a lactose intolerance or are sensitive to another food, try not to compare your condition to someone else’s.

10. “My cousin’s friend cured herself with chamomile tea!”

People with IBD have heard about remedy after remedy from others, but they’ve likely already tried several treatment options.

“The severity of the disease varies between individuals, so what might work for one person might not necessarily work for another,” says Dr. Bishara. “People can feel like you’re trying to tell them they must not be doing the right thing if you give them unsolicited advice.”

It’s also important to keep in mind that while certain lifestyle habits might help reduce the inflammation that triggers symptoms, there is no magical cure for IBD.

“I can’t tell you how many times people have told me ‘I think you’re just not drinking enough water’ or ‘If you only meditated for five minutes every day, you wouldn’t have any of these symptoms,’” says Samantha. “People also tell me autoimmune conditions can be cured with the right all-natural diet, which is just scientifically wrong.”

What’s more, someone with IBD has likely already put a lot of time, energy, and effort into feeling better, and unsolicited recommendations can seem dismissive of that.

“There’s this assumption that I’m not doing everything I can,” says Samantha R. “It’s almost a little bit of judgment, as though I’m not trying hard enough to fix my ulcerative colitis. But I assure you, I don’t want to be dealing with this either.”

Banana AS, et al. Inflammatory bowel disease and anxiety: links, risks, and challenges faced. Clinical and Experimental Gastroenterology. March 23, 2015. doi:

 Inflammatory bowel disease (IBD). Mayo Clinic. March 3, 2020.

Inflammatory Bowel Disease (IBD) Treatment. UChicagoMedicine. October 27, 2020.

Interview with Christine Bishara, MD, an internist with a focus on gut health and wellness medicine in New York City

Lactose Intolerance. Mayo Clinic. April 7, 2020.

Nutrition Tips for Inflammatory Bowel Disease. UCSF Health. October 27, 2020.

U.S. National Library of Medicine. Irritable Bowel Syndrome. October 27, 2020.

86 Migraine: New Global Healthy Living Foundation Educational Campaign and Video Series Busts Myths About Migraine and Urges People to Take Back Control



Jessica Daitch

Phone: 917-816-6712

Email: [email protected]


UPPER NYACK, NY (November 18, 2020) – The Global Healthy Living Foundation (GHLF) today launched 86 Migraine, an educational campaign that encourages people living with migraine to discard, or 86, what they know about migraine. Migraine is a disabling, neurological disease that impacts more than 37 million Americans and four million will experience chronic migraine, consisting of attacks more than 15 days a month. Unfortunately, fewer than 50 percent of people who meet the criteria of the illness have ever been diagnosed. The 86 Migraine campaign includes educational articles, quizzes, and four new videos that depict the experience of migraine. For example, one of the videos rejects the idea that men can power through pain and, instead, encourages men seek support.

“Though women are disproportionately affected by migraine, men also experience painful and debilitating attacks, but are less likely to report them,” said Joseph Coe, MPA, a person living with migraine and the Director, Education and Digital Strategy, at GHLF and CreakyJoints. “In an effort to reach the entire community of people living with migraine, one of our 86 Migraine videos directly speaks to men’s experience of the disease to discourage suffering in silence and encourage having a conversation with their health care provider to identify a management strategy.”

Other campaign materials will debunk common myths about migraine, educate on traditional, complementary, and alternative therapies, and provide support. People living with migraine can download for free GHLF’s Migraine Patient Guidelines and/or Migraine Caregiver Guidelines. In addition, 86 Migraine will encourage people living with chronic migraine to join GHLF’s 50-State Network, which helps people living with chronic disease advocate for better access to care on the local, state, and federal level.

“It’s a myth that migraine is just a really bad headache. The multitude of symptoms that comprise an attack can derail your entire day and chronic attacks will diminish your quality of life. Our goal is to provide support to the people who live with migraine so that they are empowered to educate themselves and their loved ones about migraine, and then take action to determine their management strategy based on their goals,” said Louis Tharp executive director and co-founder of GHLF and CreakyJoints.

Visit to watch the videos and review educational materials.

86 Migraine is made possible with support from Amgen/Novartis and Eli Lilly.

About Global Healthy Living Foundation

The Global Healthy Living Foundation is a 501(c)(3) non-profit organization whose mission is to improve the quality of life for people living with chronic illnesses (such as arthritis, osteoporosis, migraine,  psoriasis, inflammatory bowel disease, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness efforts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the digital arthritis community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research through ArthritisPower® (, the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions. GHLF also hosts PainSpot (, a digital risk assessment tool for musculoskeletal conditions and injuries. Visit http://www.ghlf.orgfor more information.

Find us on social media:

Facebook: and

Twitter: @GHLForg, @CreakyJoints, #CreakyChats

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp

TikTok: globalhealthylivingfnd


[i] Last accessed on 11/6/2020

[ii] World Health Organization. Last accessed on 11/6/2020

5 Things Chronic Illness Patients Should Know About the ‘California v. Texas’ Supreme Court Hearing

Pre-Existing Health Condition

The Supreme Court will hear yet another lawsuit against the Affordable Care Act (ACA) starting today that could have major implications for patients with chronic conditions. The case is known as California v. Texas.

While the outcome of this case is important for all Americans, it’s particularly important if you have pre-existing conditions. Here’s what the Global Healthy Living Foundation and CreakyJoints patient community should know about the case and how its outcome could affect access to health care.

1. Protections for pre-existing conditions would be eliminated if the Court rules the ACA unconstitutional

A core component of the ACA is that it protects patients with pre-existing conditions from being discriminated against in the purchase of health care. Under the law, insurers can charge more for smokers, but not for those with pre-existing conditions. If the law is held unconstitutional this protection would disappear and anyone with a pre-existing condition — such as a chronic disease like rheumatoid arthritis — would be at risk of losing their health coverage or having the cost of their premiums dramatically raised.

Before the ACA, insurers could turn a person down for an individual policy or charge them more, based on their medical history. The nonpartisan Kaiser Family Foundation estimates that about 54 million working-age adults have health issues that would have made them “uninsurable” before former President Barack Obama’s signature law.  Tens of millions more have issues that could have led to higher premiums. Female gender was one, as insurers routinely charged women more.

And it’s likely that COVID-19 could become America’s newest pre-existing condition for the more than 10 million people who have tested positive so far. Under the ACA, a coronavirus case cannot be used to deny someone coverage or charge them more. If the ACA is gone, that becomes a real question.

2. The lawsuit was originally brought by the state of Texas and other Republican-led states against the United States

The Justice Department — under President Trump — is no longer defending the law in the Court. The defense of the law is being led by California, along with 20 other states. The House of Representatives has also entered the lawsuit in defense of the ACA.

3. “Severability” is the buzzword to know

The key legal argument for invalidating the law is the mandate requirement of the ACA. In 2010, Congress included a “mandate” to purchase health insurance, along with a penalty for those who failed to comply.

In 2017, Congress reduced the penalty to zero dollars, effectively getting rid of the mandate.

In an earlier ruling, the 5th Circuit majority agreed with Plaintiffs (led by Texas) that the elimination of the penalty made the individual mandate unconstitutional because it can no longer be justified as a tax.

The question is: If the individual mandate is deemed unconstitutional in the current case before the Supreme Court, does that make the entire ACA unconstitutional? It is possible that the Court will rule that the mandate is unconstitutional, but “sever” the remainder of the law, thus keeping the bulk of the ACA.

This would be reassuring news for people with pre-existing conditions as it would somewhat keep the status quo. The ACA law would survive without the mandate.

4. Welcome Justice Barrett

This is the most significant case that newly minted Supreme Court Justice Amy Coney Barrett will hear in her short tenure on the court. In her confirmation hearings last month, Barrett said there is a “presumption of severability” — giving hope to health care advocates that much of the law might remain even if the issue of the mandate is found unconstitutional.

5. A ruling on the case is not expected until next spring

So save your nail biting (if you even have nails left to bite at this point). And the House and Senate could always pass new legislation to address any changes in the ACA that would negatively affect people with pre-existing conditions. We’ll see about that.

Veterans Coping with Migraine: ‘I Started Getting Debilitating Migraine Attacks While Serving in the Gulf War — and They Never Went Away’

Veteran with Migraine Eula Moore-Marshall

This story was told to the Global Healthy Living Foundation by Eula Moore-Marshall, a 56-year-old veteran from Blue Island, Illinois, who started having migraine attacks during her time in the Gulf War. Head pain is one of several symptoms reported by veterans who served in the Gulf War, in what is commonly known as “Gulf War Syndrome” or “chronic multi-symptom illness.” This is Eula’s story with chronic migraine pain, and what she’s learned from her experience.

I joined the military in 1983 because I didn’t have enough money to finish college. About a year later, I went back to school — but I ended up spending 21 years in the military.

My job was as an army administrative specialist, which is basically like a clerk typist, in the 416th Engineer Command out of Darien, Illinois. I was in the reserves and also ended up training for nuclear biological chemical warfare.

Throughout my time in the military, I was able to do a lot of traveling. It was a great experience to go to different countries and see how other people lived. The places I visited included Germany, Honduras, Japan, Korea, Canada, and Italy.

Then, we were called to go to Saudi Arabia during the Gulf War. I was there for five and a half months. It was different from your regular training for war. You’re actually there in the conflict and always on guard.

It was a shock to the system going from training to real life — and to put what you had trained for through so many years into actual action.

When the Migraine Attacks Started

I had secret clearance and typed up contracts for different units that would come into Saudi Arabia in preparation for the conflict. I was in the nuclear, biological, and chemical warfare group, which was responsible for setting up a contamination village just in case we were hit with chemicals.

That’s when my migraine attacks started. It was December of 1990, and I never experienced head pain like that before. First I would get a sharp pain in the right front part of my head, like an ice pick headache. After that, my head would throb, and it was a nagging pain that wouldn’t go away.

It knocked me out to the point where I couldn’t do anything — I couldn’t see and couldn’t concentrate. I could be walking, talking, or working, and I’d have to stop in my tracks and close my eyes because it was so painful.

Each migraine attack would last for three to four days, and I had one 22 days out of the month.

How I Was Tested and Treated

I had tests done when I was in Saudi Arabia and when I returned home, but everything was normal. MRI and CAT scans gave no indication as to why I was having migraine attacks.

When I was in Saudi Arabia, I went to the sick hall and the doctors gave me pain medications called Midrin and Fiorinal (which is a narcotic and not legal here in the United States). While medication helped to shorten the duration of the migraine attack, it would make me really sleepy. Because of that, there were times when I could not take my medication and I had to suffer through the pain.

The sick hall doctors wrote a prescription for me to rest upon having the pain, but I wasn’t able to do that because it was wartime. The officers and the people I worked with would have a tendency to think I was trying to get out of work, but I wasn’t. It was just that painful.

There were times when I was typing in a MOPP suit (a chemical suit), with a gas mask and helmet. I’d be in excruciating pain with all of this equipment on.

At that time, I didn’t know of any triggers for my migraine attacks. It was so new to me that I didn’t know what triggers were, or even that I was experiencing chronic migraine. I didn’t know what was going on because I had never had pain like that before, and I didn’t have anyone to talk to about it.

Returning Home from War

After I returned home from the Gulf War on May 15, 1991, I still had migraine attacks three to four days a week. I would have such bad pain at nighttime that I couldn’t lie down. If I did, my head would throb and hurt even more, and then I’d have to get up to throw up.

Two nights out of the week, I was in the bathroom sitting next to the toilet. I would roll into a ball and sleep there, right on the floor.

Since I was back in reserve status at this time, I also held a full-time civilian job. The migraine attacks had gotten so bad that my eyesight left one day at work, and I couldn’t see anything. Everything went black. My supervisor and my coworker walked me to the bathroom and helped me into the stall. Once I sat on the toilet, my eyesight finally started to return.

Over the years, my neurologist would prescribe migraine medications like sumatriptan (Imitrex). The pill form didn’t do anything for me, so my doctor suggested that I try the shot form. Instead of making my migraine attack go away, the shot made it worse. It felt like my brain was trying to escape from my skull.

My civilian job ended up letting me go because my migraine disease kept me from working. Years after I was fired, I found out that because the chronic migraine happened to me when I was off at war, I was actually protected as a disabled veteran.

But at that point, I was too far beyond the statute of limitations to place a claim and try to get my job back.

I wound up getting another job working for the state of Illinois in the Department of Human Rights, but I ended up going on medical leave because my head was hurting so bad that I couldn’t go to work.

What My Life Is Like Now

Today, I still have migraine attacks three to four days per week. Most mornings, I wake up to a migraine attack. I make sure my 17-year-old son is getting prepared for his school through remote learning, and then I come back to my room and get back in bed with a pillow over my head. The TV is off, there’s no noise, and I just shut down completely.

My son is able to cook and do laundry for himself because over the years I taught him how to do those things when I couldn’t. At a certain point the migraine attacks would be so bad I’d just have to close my eyes and cry.

I no longer take Midrin because it’s not produced anymore. I have tried Botox, but it didn’t work for me. Over-the-counter pain relievers don’t work. I have tried acupuncture, which helped, but the pain would come back after a few days.

Right now I’m using Cefaly, which is a little sensor that sends electric pulses through your head. It tends to knock down the intensity a little bit, but I still have the pain.

A note from GHLF: Treating migraine disease can be complicated and what works or does not work for someone doesn’t mean it will work or not work for you. It’s important to discuss your individual situation with your health care provider.

This Is What I Want Others to Know

As soon as something starts going wrong with your body, do research on your symptoms. The more research you do, the better the communication between you and your doctor.

Also, know your triggers. I’ve since learned that weather is a trigger for me. I can pretty much predict that it’s going to rain because I’ll have aura or some type of a dull aching pain.

Finding groups of people you can talk to is very helpful. I found a chronic migraine awareness group on Facebook, and these women and some men were talking about their pain. I was like, “Oh my gosh, they’re experiencing the same thing I am!”

That’s helpful because you can otherwise feel so alone. You feel like no one can help you, and you can become depressed. You have to be careful and aware of certain mental changes — and know that there’s help out there.

I’ll put it this way: Having migraine attacks is a fight for your life. It has changed my life completely.

Virtual Patient Engagement During Worldwide Pandemic Produces Data Highlighting the Impact of COVID-19 on People Living with Rheumatic Disease



Jessica Daitch

Phone: 917-816-6712

Email: [email protected]


CreakyJoints® Research from the ArthritisPower® Research Registry Presented at the ACR Convergence 2020

UPPER NYACK, NY (November 2, 2020) – This week CreakyJoints®, the digital patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation (GHLF), is presenting data collected during the worldwide COVID-19 pandemic that spotlights its impact on people living with chronic rheumatic diseases, reporting in part that many patients stopped their immunosuppressive medications without a recommendation from their doctor. The availability and integration of digital research tools, such as the ArthritisPower® Research Registry, combined with access to complementary physician and patient networks, resulted in CreakyJoints presenting more data at the American College of Rheumatology’s (ACR) annual meeting, ACR Convergence 2020, than at previous annual meetings, with two oral presentations and eight additional poster presentations.

In April 2020, CreakyJoints launched the Autoimmune COVID-19 Project, a longitudinal study for patients with arthritis, multiple sclerosis (MS), Crohn’s and colitis, and vasculitis to track the evolving impact of COVID-19 on patients living with these conditions. Data from the English and Spanish-language study informs some of the data being presented at the ACR Convergence 2020.

In the ArthritisPower study (n=1,517), Concerns and Behaviors of Patients with Common Autoimmune Rheumatic Diseases in the United States Early in the COVID-19 Pandemic, and a study using the identical survey (n=9,004) but conducted in partnership with the AARA multi-state rheumatology provider network, Concerns and Health-Related Behaviors During the COVID-19 Pandemic in Patients with or without Autoimmune Rheumatic Disease in a Large Physician Network, data shows that 10-15 percent of people living with autoimmune rheumatic disease interrupted their medication because of concerns directly related to the pandemic. In the ArthritisPower study, 14.9 percent stopped one of their medications, particularly those receiving biologics and with greater COVID-19 concerns. As reported by patients, most medication interruptions (78.7%) were not recommended by their physician.

“Rheumatologists and people living with autoimmune conditions have understandably been concerned about how autoimmune disease and immunosuppressive medications might affect susceptibility to COVID-19,” said lead study author Michael George, MD, MCSE, Assistant Professor of Medicine and Assistant Professor of Epidemiology in Biostatistics and Epidemiology at the Hospital of the University of Pennsylvania. “Our studies show that many patients living with autoimmune disease reacted to threat of COVID-19 by stopping one of their medications. At the same time, routine healthcare visits were interrupted for many patients making it harder for patients and providers to communicate. While guidelines from the American College of Rheumatology have emerged recommending that medications not be interrupted if patients are well, many patients may not be aware of these recommendations.”

Geography Impacted Healthcare Support

Another analysis of data from the AARA network, reported in Impact of COVID-19 on Missed/Cancelled Rheumatology Office Visits and Parenteral Immunosuppressive Medication, found that people with rheumatic disease frequently avoided office visits and laboratory testing, and experienced a reduced volume of immunomodulatory treatments.

Before the pandemic, 100 percent of return visits to healthcare providers were in-person. After March 15, return patient visits (mean 10,678/week) dropped to 70 percent, but were supplemented telemedicine visits (29.7%). However, even as telemedicine visits increased and office visit volume declined, the frequency of missed/cancelled in-person appointments also increased. For example, from March 23-28, 15 percent of all appointments were missed/cancelled overall, 17.9 percent for in-person visits vs. 5.1 percent for infusions (p< 0.0001). Patients with lower socioeconomic status (SES) had a 5-20 percent higher likelihood to miss/cancel office visits compared to those in the highest SES quintile.  Other factors associated with missing/cancelled office visits included greater driving distance to the rheumatologist office, female sex, smoking, comorbidities (e.g. anxiety, asthma, back pain, diabetes, fibromyalgia, GERD, sleep disorder) and region.

Dr. George added, “You might think that rural communities would have greater use of telehealth simply because practices are spread out geographically, but our study showed that people living in urban centers had greater concerns about COVID-19 given the population density and were more likely to make the switch the telehealth. Rheumatology practices in urban centers seem to have adapted to the pandemic fairly rapidly to maintain access to care.”

Digital Tools Increase Patient Adherence

In an oral presentation, CreakyJoints will summarize analysis of participant engagement and adherence from the Digital Tracking of Arthritis Longitudinally (DIGITAL) study, an ancillary study of the ArthritisPower® registry. The team characterized participating patients’ engagement, protocol adherence, and data completeness in an ongoing study in rheumatoid arthritis (RA). For at least 10 days of the 2-week Lead-In period, patients were required to electronically complete two daily single-item Pain and Fatigue numeric rating scales and also longer weekly sets of electronic patient-reported outcomes (ePROs). Those participants who successfully completed the Lead-In were mailed a smartwatch (Fitbit® Versa™) and study materials to then participate in the Main Study, which included automated and manual prompts to complete daily and weekly ePROs, wear the smartwatch and regularly sync it for the next 3 months. Researchers report in, Participant Engagement and Adherence in an ArthritisPower Real-World Study to Capture Smartwatch and Patient-Reported Outcome Data Among Rheumatoid Arthritis Patients, that a short lead-in period appears useful to identify patients most likely to engage in a longitudinal digital health study collecting data on a mobile app and was associated with subsequent patient adherence, and this adherence may vary by data collection platform.

“Given the availability of smart phones, smart watches and other digital devices, it’s important to understand patients’ willingness to engage in research with these devices as well as to confirm the completeness of the data,” said W. Benjamin Nowell, PhD, study author, Director of Patient-Centered Research at CreakyJoints, and principal investigator of ArthritisPower. “This study demonstrates that real-world studies involving passive data collection in RA are feasible and that they benefit from patient-centered implementation and design to minimize patient burden, promote longitudinal engagement and maximize adherence.”

This study is sponsored by Eli Lilly and Company.

·         Effects of the COVID-19 Pandemic on Patients Living with Vasculitis, Abstract 1416 (poster)

·         Treatment Decision Making Among Axial Spondyloarthritis Patients: Real-World Data from the ArthritisPower Registry, Abstract 0154 (poster)

·         Changes in Patient-Reported Outcome (PRO) Scores for Nausea and Fatigue Following Weekly Methotrexate Dose in a Real-World Sample of RA and PsA Patients in the ArthritisPower Registry, Abstract 0155 (poster)

·         Patient Perceptions of Fibromyalgia Symptoms and the Overlap with Axial Spondyloarthritis, Abstract 1316 (poster)

·         Stepping Up for Inflammatory Arthritis (SUFIA): A Pilot Trial to Test Behavioral Economics Strategy to Increase physical Activity in Inflammatory Arthritis, Abstract 0546 (poster)

·         Implementation of Web-Based Patient-Reported Outcome Measures (PROMs) in SLE Clinical Care: A Multi-Center Prospective Cohort Study, Abstract 1145 (poster)

Created by CreakyJoints®, ArthritisPower is the first-ever patient-centered research registry for joint, bone, inflammatory skin conditions, and arthritis and rheumatological manifestations of gastrointestinal-tract (GI) conditions. With more than 29,000 consented arthritis patients, the free ArthritisPower mobile and desktop application allows patients to track and share their symptoms and treatments while also participating in voluntary research studies in a secure and accessible manner. Results from ArthritisPower studies are frequently published in peer-reviewed journals and presented at medical meetings in the United States and around the world. ArthritisPower Patient Governors serve as gatekeepers for researchers who seek to access registry data or solicit the community to participate in unique, voluntary studies. ArthritisPower’s past participation in PCORnet®, the National Patient-Centered Clinical Research Network, was supported through multiyear, multimillion-dollar Patient-Centered Outcomes Research Institute funding awards [PPRN-1306-04811]. To learn more and join ArthritisPower, visit

CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites,,, and the 50-State Network, which includes more than 1,500 trained volunteer patient, caregiver and healthcare activists.

As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® ( with more than 29,000 consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints also publishes the popular “Raising the Voice of Patients” series, which are downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (, a digital risk assessment tool for musculoskeletal conditions and injuries. For more information and to become a member (for free), visit


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A Dermatologist with Psoriasis Shares Her Top Home Remedies for Soothing Skin

Dermatologist with Psoriasis

If you live with psoriasis, you know the toll it can take on your everyday life. Beyond thick, scaly patches, you may experience itching, burning, soreness, swollen and stiff joints, and a number of other symptoms.

You’re certainly not alone: In the United States, psoriasis is a common autoimmune disease that affects more than 7 million adults, per a 2014 study in the Journal of the American Academy of Dermatology. However, that doesn’t stop misperceptions about the condition from running rampant.

“Some people can be mean about it, and even other doctors who are in other fields may not understand psoriasis, how to treat it, or what it’s like to live with it,” says Anna Chacon, MD, a board-certified dermatologist at Cleveland Clinic in Florida and expert medical writer for

Dr. Chacon has psoriasis herself and has experienced scaling on her feet, hands, and scalp. She recalls an incident in which a surgery professor during her intern year of medical training incorrectly assumed that individuals with psoriasis (including herself and another team member) have an infection.

“A lot of people think psoriasis is an infection or that patients with psoriasis don’t have good hygiene, but psoriasis is an autoimmune inflammatory condition that causes scaling and thickening of the skin,” Dr. Chacon says. “It can happen to anyone.”

Because of the symptoms and misconceptions Dr. Chacon has experienced as a result of her psoriasis, she says she’s able to better connect with her psoriasis patients and provide her own best tips and remedies for them.

“It’s hard to live with psoriasis because it’s not only a visual ailment, but it also affects self-esteem and causes symptoms like itching, scaling, and joint pains,” says Dr. Chacon. “Having psoriasis myself definitely makes it easier to talk to patients, because I always remember my own experience and how I’ve felt.”

If you have psoriasis, it’s important to maintain a healthy lifestyle that includes eating healthy, exercising regularly, and managing stress. Although psoriasis is genetic, other factors can worsen it or trigger flares (like stress or illness), per the National Institutes of Health. Those with psoriasis are also more prone to psoriatic arthritis, cardiovascular problems, obesity, high blood pressure, and diabetes.

Talk to your dermatologist about a specific medical treatment plan for your particular type of psoriasis.

However, these tips from Dr. Chacon — which she regularly uses herself — may also help to soothe your skin along with medical treatment.

1. Shower with warm (not hot) water

People with psoriasis can also have aching joints, particularly if you have psoriatic arthritis. In fact, joint symptoms are sometimes early signs of psoriasis, according to the Mayo Clinic.

“I find that showering with warm water helps, as well as using warm compresses for joints,” says Dr. Chacon. “After being in the pool or the ocean, a quick shower right after is also really helpful for preventing flares that can be uncomfortable.”

While warm water may help sore joints, definitely avoid hot water, which can dry out your skin.

Other bathing tips for psoriasis-prone skin from the American Academy of Dermatology (AAD).

  • Take just one bath or shower per day
  • Keep baths to 15 minutes or less and showers to five minutes or less
  • Wash your skin very gently with your hands rather than a loofah or washcloth to prevent irritation

2. Add oil to your shower routine

Dr. Chacon also uses body oil in the shower, especially if she’s in a dry environment and doesn’t have time to moisturize afterward.

“I shower with body oil after lathering up with soap, which helps to moisturize my skin,” says Dr. Chacon. “Showering with body oil usually allows for more hydration. It’s also important not to overdo it with soap, which a lot of people are doing since we’re dealing with COVID-19.”

When possible, Dr. Chacon recommends also moisturizing immediately after your shower.

“That’s a good time to put on moisturizers or emollients because the skin is humid and retains the moisture,” says Dr. Chacon. (Moisturizers add moisture to the skin, while emollients soften the skin and are often an ingredient in moisturizers.)

In fact, the AAD recommends drying your skin gently by simply blotting it with a towel, leaving a little water so your skin remains damp.

Try it: Neutrogena Lightweight Body Oil, $14.97;

3. Moisturize with petroleum jelly

No need to break the bank on expensive moisturizers: Petroleum jelly (Vaseline) is Dr. Chacon’s top pick for soothing scaly and dry skin.

“It’s my favorite moisturizer and emollient in dermatology to recommend to everyone because it’s affordable, it’s found everywhere, and it comes in all kinds of sizes,” she says. “It helps to reduce scales and promote hydration by restoring the impaired skin barrier.”

You can even purchase small Vaseline travel jars that are easy to toss in a bag or keep in your car for on-the-go moisturizing.

“Although it is a thick, greasy emollient, Vaseline can and will moisturize anything,” says Dr. Chacon. “It also helps to prevent the embarrassing white scaling and dandruff that scatters on your clothing when you have psoriasis.”

Dr. Chacon says she manages the thick psoriasis plaques on her feet by applying Vaseline and then putting on a pair of cotton socks.

Other experts agree: Emollients like petroleum jelly should be used liberally and frequently to avoid skin dryness in those with psoriasis, per a 2017 review in the Indian Dermatology Online Journal. “Emollients form the backbone of therapy for psoriasis,” note the review authors. “They are a valuable first-line treatment because dry skin is common in psoriasis and adds to its irritability.”

Try it: Vaseline BlueSeal Series (Variety Pack), $9.92;

4. Use natural oils on your scalp

“The worst area where I have psoriasis is on the scalp, and it’s caused a lot of embarrassing dandruff, itching, and when it was poorly controlled, even hair loss,” says Dr. Chacon. “Natural oils like jojoba oil and coconut oil are helpful for reducing scales on the scalp.”

If you don’t want to feel too greasy on your way out the door, apply the oil to your scalp at bedtime. As a bonus, you may get an extra healing boost: Your skin actually does most of its repair work at night, Dr. Chacon adds.

Coal tar shampoo, often recommended for patients with psoriasis, can also be helpful for soothing scalp irritation. “Sometimes I mix it with regular shampoos and conditioners,” says Dr. Chacon.

Less expensive than most psoriasis treatments, coal tar can be used long-term to effectively treat plaque-type psoriasis, itch, and scaling. Dermatologists have been prescribing coal tar for more than a century to treat psoriasis — but some patients, like women who are pregnant or breastfeeding, should avoid it, per the AAD.

Try it: Organic Jojoba Oil, $9.99;

Try it: MG217 Psoriasis 3% Coal Tar Shampoo, $6.19;

5. Ask your dermatologist about salicylic acid

You may need prescription-strength salicylic acid to help remove psoriasis scales. Salicylic acid works by softening keratin, a structural protein in the skin.

“I use a 6 percent concentration of salicylic acid whenever I have a lot of rough scales on the feet that I want to tone down,” says Dr. Chacon. “However, it’s something that needs to be used in moderation, because it can make your skin sensitive and irritated by breaking down keratin.”

If you’d like to try an over-the-counter remedy for thick scales, CeraVe SA Lotion exfoliates with salicylic acid and lactic acid (which also breaks down keratin). Dr. Chacon also recommends Amlactin, which uses lactic acid to exfoliate tough skin.

Try it: CeraVe SA Cream, $19.97;

Try it: Amlactin Foot Repair Foot Cream Therapy, $7.79;

6. Get outside for sun and (if possible) sea

Because her psoriasis is “relatively under control,” Dr. Chacon uses mostly uses topical treatments at this time. “Sometimes I use a topical vitamin D ointment, however it is not practical or affordable for many patients because it is hard to find insurance coverage for this treatment,” she says.

That said, she also gets vitamin D and soothes psoriasis symptoms by spending time outside in the sun and sea. “I use phototherapy and balneotherapy [immersion in mineral water], mostly by going into the ocean,” says Dr. Chacon. “The combination of minerals, direct sunlight — with sun protection and sunscreen of course — is therapeutic and is feasible to do in a climate like the one in South Florida.”

Short exposure to sunlight or ultraviolet (UV) light may also help control psoriasis symptoms, according to Michigan Medicine. However, it’s important to avoid too much sun, which can damage the skin, cause skin cancer, and trigger flares of psoriasis if you get a sunburn.

Even if you don’t live by the ocean, you can soak to soothe your psoriasis in other ways. “I also like to use coal tar baths, a very old-school regimen,” says Dr. Chacon.

Some medical centers provide coal tar bath treatments, which may be paired with prescription phototherapy (light therapy), says Dr. Chacon. Talk to your dermatologist about which options are available to you.

The Importance of Medication for Psoriasis

For many psoriasis patients, home remedies and topical treatments are part of an overall treatment plan that includes medication to control the underlying cause of psoriasis: an overactive immune system.

Mild cases of psoriasis may respond to topic medication, such as steroid creams or other prescription creams.

But for moderate or severe cases of psoriasis, your dermatologist will likely recommend systemic medication. This means taking an oral pill or getting injections or infusions of medications to tamp down the overactive immune system that is causing psoriasis plaques.

“This is an individual decision that I usually make in conjunction with the patient’s needs and concerns about their quality of life,” says Dr. Chacon. “Most of it has to do with TBSA (total body surface area of involvement), presence of joint pains, and unresponsiveness to treatment. This is when I usually have a discussion about the possibility of including a systemic medication, whether it be an oral or injectable therapy for greater efficacy and better results.”

For Dr. Chacon, having experienced psoriasis herself shapes how she advises patients in finding the right medication.

“Going through dermatologic and medical conditions has undoubtedly made me a better, and more empathetic physician,” says Dr. Chacon. “I like to think it has made me relatable to others, and makes it easier to understand what it means to be in their shoes.”

8 Ways to Stop Baths and Showers From Worsening Your Psoriasis. American Academy of Dermatology. October 21, 2020.

Interview with Anna Chacon, MD, a board-certified dermatologist at Cleveland Clinic in Florida

Psoriasis. Mayo Clinic. May 2, 2020.

Psoriasis. Michigan Medicine. October 30, 2019.

Psoriasis. National Institute of Arthritis and Musculoskeletal and Skin Diseases. March 2017.

Psoriasis Treatment: Coal Tar. American Academy of Dermatology. October 21, 2020.

Rachakonda, TD et al. Psoriasis prevalence among adults in the United States. Journal of the American Academy of Dermatology. January 6, 2014. doi:

Torsekar R, et al. Topical Therapies in Psoriasis. Indian Dermatology Online Journal. July-August 2017. doi:

Nationally Recognized Infectious Disease Experts Will Discuss and Encourage Flu Vaccination During the Pandemic



Jessica Daitch

Phone: 917-816-6712

Email: [email protected]


Global Healthy Living Foundation to Host Live Webinar on October 27


UPPER NYACK, NY (October 23, 2020) – The Global Healthy Living Foundation (GHLF), a patient-centered non-profit organization whose mission is to improve the quality of life for people with chronic illness, will host a live, 1-hour webinar on October 27 at 5pm EDT titled, “The Flu Vaccine and COVID-19: What People with Chronic Illness Need to Know.” Nationally recognized infectious disease and chronic disease health care providers will contribute their perspective and answer questions about why getting vaccinated against the flu is a priority this year, particularly for those living with chronic conditions such as inflammatory arthritis. The expert panelists will debunk common myths about the flu shot and share information about where and how to safely get the flu vaccine.

Panelists include:

  • William Schaffner, MD, Medical Director of the National Foundation for Infectious Diseases (NFID) and Professor of Preventive Medicine and Infectious Diseases at Vanderbilt University
  • Iris Navarro-Millan, MD, rheumatologist and Assistant Attending Physician, Hospital for Special Surgery; Assistant Professor of Medicine Weill Cornell Medicine; and rheumatologist, New York-Presbyterian/Weill Cornell Medical Center. Dr. Navarro-Millan was recently featured in The New York Times article titled, How Covid Sends Some Bodies to War With Themselves
  • Tasha Polster, RPh, Vice President of Pharmacy Quality, Compliance and Patient Safety for Walgreens

“Unfortunately, it’s likely that both the flu and COVID-19 virus will spread as fall and winter advances. Getting a flu vaccine during the 2020-2021 flu season is critical because even if the vaccine doesn’t prevent flu entirely, it can reduce a person’s risk for serious complications and possibly death,” said Dr. William Schaffner. “During this webinar, we will explain why flu vaccination bolsters an individual’s immunity while supporting the public’s health, and we’ll highlight its importance for people at higher risk for complications resulting from flu or coronavirus infection.”

Vaccination Will Protect Healthcare Resources

“If we can reduce the incidence of flu and complications from flu, not only does it improve short and long-term health outcomes for individuals, but it will conserve health care resources that are still needed to cope with patients who contract COVID-19,” said Dr. Iris Navarro-Millan. “When we all get vaccinated against flu, we protect ourselves, our families, our communities and vulnerable patient populations.”

The Flu Vaccine and COVID-19: What People with Chronic Illness Need to Know is a free event open to the general public and media

“Flu vaccines are widely available at health care provider offices, retail pharmacies, and other locations hosting vaccination clinics at no cost to patients with most insurance plans. As those with chronic illnesses may be at greater risk for severe complications from COVID-19 and flu, we look forward to doing our part to help educate those who most need to be protected against the flu, particularly in a COVID-19 environment,” said Tasha Polster.

“The Global Healthy Living Foundation is committed to bringing evidence-based education and support to at-risk chronic disease patients who are especially susceptible to complications from coronavirus and flu, either due to weakened immune systems from their chronic conditions, or due to immune-suppressing medications that they use to treat those conditions,” said Louis Tharp, executive director and co-founder of the Global Healthy Living Foundation and CreakyJoints, its digital patient organization for people living with all forms of arthritis. “We’re excited to welcome our panelists to this important discussion and encourage people living with chronic disease, their family, friends, and the community at large to join this event, ask questions, and make a plan to get vaccinated for flu.”

About Global Healthy Living Foundation

The Global Healthy Living Foundation is a 501(c)(3) non-profit organization whose mission is to improve the quality of life for people living with chronic illnesses (such as arthritis, osteoporosis, migraine,  psoriasis, inflammatory bowel disease, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness efforts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the digital arthritis community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research through ArthritisPower® (, the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions. GHLF also hosts PainSpot (, a digital risk assessment tool for musculoskeletal conditions and injuries. Visit for more information.

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Twitter: @GHLForg, @CreakyJoints, #CreakyChats

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If You Have ‘Palmoplantar’ Psoriasis, You’re Also at Risk for Diabetes, Heart Disease, and Mood Disorders

Dry Cracked Hands

Psoriasis is often thought of as a skin condition, though in reality it’s an autoimmune disease that has the potential to impact many different parts of the body. Many people with psoriasis have more than just skin lesions. A sizeable group also develops arthritis (a condition known as psoriatic arthritis) and/or eye inflammation. Having psoriasis also seems to increase your risk for other health issues, including  type 2 diabetes, cardiovascular disease, and mental health problems such as depression.

While most people with psoriasis develop plaques on their scalp, elbows, knees, or back, some have palmoplantar plaque psoriasis, which means that only the palms of their hands and soles of their feet are impacted.

Is having this type of psoriasis as bad as the generalized variety when it comes to co-occurring conditions like diabetes?

To find out, Israeli researchers analyzed data on163 people with palmoplantar psoriasis to determine how often they experienced health conditions besides skin plaques. They then compared the rates of various health problems in this group to their prevalence in a control group (who had no psoriasis) containing data on 781 people.

According to their research, diabetes, cardiovascular disease, and mood disorders “were significantly associated with palmoplantar plaque psoriasis.”

The connection between this kind of psoriasis and mood disorders was especially strong: About 24 percent of those with palmoplantar psoriasis had been diagnosed with one, versus less than 4 percent of those in the control group.

The scientists also found that people with palmoplantar plaque psoriasis were somewhat more likely than those in the control group to have abnormal blood lipids (like cholesterol), high blood pressure, and psoriatic arthritis, “but those associations did not reach statistical significance.”

Greenberg R, et al. Comorbidities in patients with palmoplantar plaque psoriasis. Journal of the American Academy of Dermatology.  August 15, 2020. doi:

Psoriasis. Mayo Clinic.

Anemia Might Be Early Sign of Crohn’s Disease, Especially in Men


Many people with Crohn’s disease, an inflammatory disorder that impacts the digestive tract, become anemic. Now a new study suggests that “healthy” people who’ve recently developed anemia ought to be flagged as higher risk for developing Crohn’s disease.

Anemia is a condition where people don’t have enough healthy red blood cells to carry adequate oxygen to the body’s tissues.

The research, which was published in the journal PLOS One, was a population-based study. Researchers from South Korean used the country’s massive National Healthcare Insurance database to examine the prevalence of anemia and learn about its association with the subsequent diagnosis of inflammatory bowel disease (which includes Crohn’s disease as well as ulcerative colitis).

According to the findings, people who were the most severely anemic (as measured by hemoglobin levels) were 3.3 times more likely than those with plenty of red blood cells to be diagnosed with Crohn’s disease within the next seven years.

Crohn’s disease can cause anemia because patients experience gastrointestinal bleeding, or because they don’t properly absorb iron and other nutrients, which are needed to produce healthy red blood cells.

The researchers determined that the connection between anemia and the later onset Crohn’s was strongest in male patients.

They did not find any significant link between anemia and the development of ulcerative colitis for men or women. Crohn’s disease and ulcerative colitis are similar, but ulcerative colitis only impacts the large intestines whereas Crohn’s can affect any part of the digestive tract.

“Colonoscopy is the most effective diagnostic test to evaluate the presence of [inflammatory bowel disease] in asymptomatic individuals, but this test is not appropriate for disease screening due to its expense and invasiveness,” the authors of the PLOS One study explained.

They suggested that new onset of anemia, particularly in men, ought to be considered a “surrogate marker” for Crohn’s disease and that it should be further studied as a potential tool to aid earlier diagnosis.

Kang EA, et al. Anemia is associated with the risk of Crohn’s disease, not ulcerative colitis: A nationwide population-based cohort study. PLoS One. September 8, 2020. doi: