Author: books

By Dwayne McClellan, as told to Kara Mayer Robinson

I’m 56 and I live in Baltimore, MD. Last year, I discovered I have psoriatic arthritis (PsA). I used to be a software systems engineer, but I’m no longer working because of my disability.

My journey started in 2014, when I was diagnosed with osteoarthritis and rheumatoid arthritis. As my condition got worse, I also developed PsA.

Getting the Diagnosis

I was diagnosed with PsA in 2020.

I’d started complaining to my rheumatologist about pain in my leg. One the symptoms of PsA is you start having pain in your major joints, like your shoulders, elbows, knees, and ankles. I started having hip pain down my right leg, which is a sign of psoriatic arthritis.

My rheumatologist went back and rechecked my blood to make sure she didn’t miss anything. That’s when she noticed other signs and told me I had PsA.

When I found out, I was disheartened. My first thought was, “Oh great, not only is my arthritis not getting any better, it’s getting worse.” I was already having trouble getting around. I use a power chair at times, and the worst-case scenario for me was to end up in that chair permanently.

My New Challenges

It’s been an adjustment. One of the biggest challenges is my loss of independence. Instead of driving, I sit in the passenger’s seat. My wife has to take on household duties. I can’t mow the lawn. I can’t take out the garbage.

Mornings are especially hard, before I take my medication. But my determination gets me out of bed.

I remind myself that I’ve gotten out of bed every single day and I can do it again. And I have a goal. I try to make breakfast for my wife and myself every morning. It’s a small goal, but it gets me out of bed.

Managing My Symptoms

I currently take an immunosuppressant. I also take a prescription nonsteroidal anti-inflammatory drug (NSAID) and an antidepressant that blocks nerve pain. These keep pain from overloading my system. I started taking those when I was diagnosed with RA. As my PsA developed, I started taking increased doses. Now I’m taking the maximum dose.

I’ve also started eating an anti-inflammatory diet, which helps me manage flare-ups. I watch my salt and sugar. I try not to eat too much red meat. Sometimes I get a craving for a T-bone steak. But if I eat it, it’s guaranteed that within 2 hours, my condition is flaring up on me.

I’ve gotten into gentle stretching. I also have a meditation routine. I try to find inspirational sayings to repeat to myself. For example: “Stress management plus time management equals pain management.” When I’m starting to get stressed out, I say it to myself. It works. I start calming down. It brings my blood pressure down.

My Medical Team

My rheumatologist and I stay on top of my health to make sure I’m feeling as good as I can. I have a great team of doctors who work together, including my rheumatologist and a pain management specialist who’s also my primary care doctor. I’m in the process of getting referrals for a pulmonologist and a dermatologist.

I see my doctors every month or two. I also use health apps on my phone to track my symptoms and keep my doctors up to date. I input my latest symptoms, then I upload the info to my doctor’s medical portal. They have it before I step in the door.

I use one app to track all my medications, including times, doses, and prescription numbers. The other app I use is MMP, or Manage My Pain Pro. It can also track pain. If you keep it updated, you can generate reports with a complete timeline. My doctors can look at the reports and get a day-by-day breakdown of my symptoms between visits.

My Emotional Support

My family is a big source of support for me. My primary support is my wife, Lydia. She’s been with me 19 years. My mother-in-law is also part of my support team.

I see a therapist to work through the emotions of having this condition. I’m frustrated because I’ve lost my independence and it’s a condition I can’t control. My therapist understands and he’s helping me work through it.

I’ve also found a lot of support in the Arthritis Foundation’s support community, which is called Live Yes! Connect Groups. I’ve joined groups, created new teams, and connected with a supportive social community. We check in with each other and lift each other up when we need it. We rally around each other. It’s kept me sane.

I’m also getting involved as an advocate. I recently became involved with the Arthritis Foundation in Maryland. I found out there was nobody advocating here, so I offered to step up. I hope to link up with other local teams to start bringing Americans with Disabilities Act issues to everyone’s attention.

My Outlook

I’ve had to make a lot of adjustments, and it’s difficult having an invisible illness. Unless there’s severe deformity in our joints or we use an assistive device, nobody can really see the damage to our bodies.

But I’ve found ways to adjust. And it’s affirming and humbling to be involved as an advocate. I feel like I’ve found a place where I can put my skills and abilities to good use to educate the public and help others who are struggling with psoriatic arthritis.

By Jose Scher, MD, as told to Hope Cristol

Psoriatic arthritis is a condition that brings many challenges, both for patients and for doctors. One of the most important ones is that you need to have patience with this disease. There’s not a simple path to either your search for answers or your search for relief. 

The journey to a psoriatic arthritis diagnosis is not a linear one. It can take years for people to get an accurate diagnosis. That can be frustrating, of course, but it’s also common. That’s because psoriatic arthritis is such a complex and varied disease. 

Different Health Issues, Same Diagnosis

Most people with psoriatic arthritis have skin inflammation years before they develop any arthritis pain.

In that way, the health journey of most patients starts the same way, at least clinically. But as the disease progresses to inflammation in the joints, tendons, or bones (called musculoskeletal inflammation), things get more complicated. 

Sometimes, you get swelling and pain in two joints, as often happens with arthritis. But in other cases, psoriatic “arthritis” is kind of a misleading name.

There’s a type in which you have inflammation of the tendons, called enthesitis. People go to their doctors with what they think is muscle pain and get treated for that. They can go for years without an accurate diagnosis.

Then there’s the spine form, which we call axial psoriatic arthritis. This essentially causes back pain. It happens mostly to younger people. So it often goes underdiagnosed or undiagnosed, especially in people who have played sports. 

One of the reasons many people don’t quickly get answers about what’s causing their pain is that there’s no biomarker for psoriatic arthritis. A biomarker is a characteristic of your body that can be measured in some way. With gout, for example, if you take a sample of fluid from a joint you can see uric acid crystals, which are specific to gout.

Imaging studies, such as MRIs, X-rays, and even ultrasounds, can be a big help in diagnosing psoriatic arthritis. But they don’t always lead to a definite conclusion. 

Treatment Concerns

When I give a patient a diagnosis of psoriatic arthritis, I usually get asked two things. First: “Is there anything I can do to cure it?” After that, “How do we treat it?” 

The concerns come after I explain that there is no cure, but that medications can be very effective. Some patients have looked up the medications online and are worried about potential side effects. I sometimes have to tell them, “Don’t confuse your Google search with my medical diploma.” 

Instead of making snap decisions based on something you’ve read online, have a wide-ranging conversation with your doctor about the risks and benefits of treatment. Again, this is where patience can be valuable for both parties. 

I try to listen to all the concerns and conceptions (and misconceptions) my patients have about treatment, so I can put them in perspective.

Powerful drugs can have powerful side effects. But they have so much to offer in terms of benefits. Usually by the end of our first treatment conversations, patients are less fearful and more ready to take the next steps to get well. 

What About ‘Natural Remedies’?

I hear all the time from patients that they really want to manage their disease with natural remedies. This might include certain foods or supplements including probiotics, which are live microorganisms linked to gut health.  

It’s an attractive and challenging idea. Researchers are doing great work in animal studies on the role that the gut microbiome plays in health and disease. But that’s early research. And much of it is in areas like cancer and inflammatory bowel disease. 

There is one “natural remedy” that we know without doubt can improve psoriatic disease: weight loss. It helps people who are even slightly overweight. It helps on a mechanical level by taking pressure off your joints. It also reduces the activity of the disease, since fat cells contribute to inflammation in your body.

But it’s not as appealing as taking a supplement or eating a certain food. It takes time — and patience — to manage this disease.

By Nora Yechou, as told to Keri Wiginton

I’m in college now, but I started having chronic pain in high school. I was diagnosed with psoriatic arthritis when I was 17. That was 2 years ago, and I’m still trying to understand what feels best. 

My symptoms don’t affect me every day. But when they do, my mom, who also has psoriatic disease, taught me that asking for help isn’t a bad thing. I’ve learned it’s OK to take care of my body the way I need to, even if people don’t think my symptoms are real or say things like, “You have arthritis? But you’re so young for that.”

I know it doesn’t really matter what other people think. It’s not their body. It’s mine. And one of the biggest things I’ve worked on is trying to listen to it more.

How I Manage My Day-to-Day

Most of my everyday pain comes from my psoriasis, which is the inverse type. But there are times when my back or joints bother me. When they hurt, I take that as I sign that I should slow down or stop what I’m doing.

I haven’t always been good about that. I used to push myself a lot, even when I didn’t feel well. But it’s way harder to recover when I go past my boundaries. Now I respect my limits.

Sometimes I just need to make small adjustments. If my wrist hurts while I’m at the dining hall, I’ll take multiple trips to my table instead of carrying everything at once. Or I’ll find an easier way to hold things. That usually means shifting the weight of the object to one of my bigger muscle groups.

I recently had to carry a big box of my medicine to my dorm room. I had to hug it so I could take pressure off my wrists and forearms. I also lift with my legs to take pressure off my back. And if I need to press on something but my fingers hurt, I’ll use my palms or elbow instead.

It also helps that I have some pretty understanding roommates and suitemates. My symptoms vary by the hour, day, or season — I’m in a little bit more pain when it’s colder. And there are times when I have to tell them, “I can’t go with you. I can’t walk across campus right now.”

It Feels Good to Stay Active

I’ve always been pretty athletic. I danced for 11 years when I was younger. My flares haven’t been as bad since I started going to the gym and exercising more.

I started running a few months ago, and I really like it. But that may not be a good long-term option for my joints. I’m still experimenting with my exercise routine. What’s most important is that I pick something that doesn’t increase my pain.

If something hurts, I quit that exercise completely or lower the amount of weight I’m lifting. Sometimes I use those assistive weight machines. They’re a great tool because they take pressure off my smaller muscles and joints.

One of my biggest issues at the gym is how I hold things. I used to grip the handles for dear life. But now I really try to be mindful that I’m pulling with my muscles, not my hands.

If my joints still hurt after I make these changes, then I’ll switch to another activity that feels good. That might be walking on the treadmill, doing ab exercises, or stretching.

Sometimes I Just Need a Break

There are some things I like to do if I’m having a physically hard day. A hot shower really helps, and so does going for a walk. I’ll try to eat less sugary foods.

But pain isn’t the only thing I deal with. There’s a mental aspect, too. I was so frustrated for so long because I felt like I was too young to be dealing with arthritis. Now I know that it’s not in my control, and I do the best I can every day.

I’ve stopped beating myself up and trying to push through the day when I feel bad. It always helps when I give myself some grace.

When I need some self-care, I may cook something I enjoy or lie in bed and watch a few episodes of a show I like. Though I’m not going to lie — as nice as it sounds, lying around all day doesn’t help my physical symptoms. But I think it’s OK to prioritize my emotional needs.

Right now, I take a biologic drug that manages both my psoriasis and psoriatic arthritis. The general prescription is two injectable pens once a month, but I flare too much on that schedule. I give myself a shot every other week.

I wasn’t afraid to try a biologic. I grew up seeing my mom give herself shots, and she’s never liked needles. She showed me that it’s possible, even if that kind of treatment is hard to think about.

Normal Life With a Chronic Illness

When I was in high school, I told people about my psoriatic arthritis as soon as I found out. Now I’m a little less upfront about it. I’m not embarrassed about my condition at all. But it’s not something I feel like I need to announce to everyone.

In general, I try to carry on with life like everyone else. I’ll share details about my health when I feel like someone needs to know about it, but I don’t let anyone give me a hard time when I can’t do something. And I certainly don’t feel guilty about having a chronic illness. This is how my body works and I have to listen to it.

Oct. 20, 2022 — Tawny Roeder was 23 years old and 3 months away from getting her nursing degree at Briar Cliff University in Sioux City, IA, when she got a job as a training nurse. She was ready to take on the world, but first she had to clear an obstacle: She felt she lacked empathy for the patients in the oncology unit where she worked.

“I knew no one with cancer at the time,” she says. “It hadn’t really impacted my life too much, so it was daunting to have to work with those patients.” 

In one word, she felt “oblivious” about the struggles these patients experience. “I felt like I didn’t have the words to care for these people. It was something that scared me.”

She was also oblivious to something far scarier that lurked in her young life. She was on the dance team at Briar Cliff, and “I should have been in the best shape of my life,” but she found her energy and wind spent too easily. 

At home during the 2008 spring break, her mom noticed her breathing difficulty. She also began having back pain that woke her up at night.

An X-ray showed a huge mass on her lung. Roeder got the results of a subsequent biopsy – lymphoma — over the phone, “which was awful. I was alone in my apartment.”

Just 2 weeks after starting to care for cancer patients in her hospital, Roeder became one. She studied for her nursing exams while undergoing chemotherapy with the help of her workmates. 

Roeder’s journey was just beginning, though. She was diagnosed with an aggressive form of diffuse large B-cell lymphoma, a life-threatening blood cancer. 

“There are several patients exactly like Tawny who are on their way to living when they are hit with this deal-breaker,” says Manali Kamdar, MD, clinical director of lymphoma services for University of Colorado Medicine. The diagnosis creates “a huge break in what happens in living a normal life.”

Roeder is one of 80,000 Americans diagnosed yearly with non-Hodgkin’s lymphoma, the most common form of lymphoma. 

Kamdar says Roeder’s is one of 85 different subtypes, and she emphasizes that“it is absolutely important that patients get that subtype.” Sometimes it takes several tests, she says, but it is important to establish the subtype as this may influence management of the disease.  

Kamdar also says there are now many different treatment options. Chemotherapy with the addition of medications has been a backbone of therapy, but now there are also chemo-free treatment options as well as approaches that involve genetically modifying a patient’s own immune cells, she says. 

“The last 3 years have seen a sea change with the number of treatments that have been approved for patients with lymphoma. What I had in my toolkit 5 years ago is nothing compared to what I have today,” she says. 

Roeder learned quickly that her cancer was so aggressive that she would need a stem cell transplant, during whichher healthy cells werecollected and stored while she underwent high-dose chemo, and would then be put back into her body intravenously. 

However, thistreatment was not available in Sioux City. The closest center was in Omaha, NE, about a 90-minute drive away.

“I was absolutely terrified,” Roeder says. She and her then-boyfriend, Cody, decided to uproot from Sioux City and move to Nebraska. “We thought it might as well be a good place for us to get jobs.”

After a monthlong stay in the hospital while she underwent intensive treatment involving chemo and stem cell therapy, she eventually returned home. She now marks Sept. 11, 2008, as her “rebirth” after the treatment. 

The night she returned, Cory proposed to her. “That was a very great coming-home surprise,” she says. “I had tubes hanging out of me. I was bald. I’m not sure it was the most romantic moment.”

The couple married the following May. Meanwhile, Roeder had started her nursing career in pediatrics, but “every time I would go to my oncology checkup, the doctor would say, ‘Come work for our team.’” 

In 2011, she took her oncologist up on the offer and began working as a staff nurse in the oncology unit at the University of Nebraska Medical Center.

“It just kind of clicked,” she says. “This is probably why I’m still here. You sometimes have that survivor’s guilt as to why some survive and others don’t.”

Roeder’s treatment left her unable to bear children, so she and Cody have adopted a boy and a girl. 

Now 37, in addition to working with lymphoma patients, she also volunteers for the Lymphoma Research Foundation to raise awareness and funding to fight the disease. “I have gained a lot of friendships — people I’ve been in contact with just because of their transplants,” she says.

Roeder, who has been cancer-free since, is now the case manager for lymphoma patients undergoing transplants. She inspires her new patients, especially those who feel alone in their disease journey. “Most are very shocked” when they hear her story, she says. “It’s really shocking for people to see that I look healthy. One hundred percent of the time it is well-received and very much appreciated.”

Oct. 20, 2022 – A variety of Toll House cookie dough is being voluntarily recalled by Nestlé USA.

The product, which is sold throughout the United States and Puerto Rico, is being recalled “due to the potential presence of white plastic pieces,” according to a notice posted on the FDA website.

“While no illnesses or injuries have been reported, we immediately took action out of an abundance of caution after a small number of consumers contacted Nestlé USA about this issue,” the company said in a news release.

The variety of cookie dough specifically being recalled is called Toll House Stuffed Chocolate Chip Cookie Dough with Fudge Filling. Affected products were produced between June and September. The UPC code on the back of recalled packages is 050000429912.

If you have one of these products at home, you can take it back to the store for a refund or replacement. Anyone with questions may call Nestlé USA at 800-681-1676 Monday through Friday from 9 a.m. to 6 p.m. ET.

No other Nestlé Toll House products are impacted by the recall. 

By Tina Aswani Omprakash, as told to Stephanie Watson

In 2005, I was fresh out of college and had just landed a prime job on Wall Street. My life should have been peaking. But inside, I felt decades older than my 21 years.

I’d had strange symptoms since I was about 8 years old — joint pain and eye issues that had no obvious cause. Now I was also getting bouts of digestive symptoms. I had acid reflux, and I bounced back and forth between constipation and diarrhea.

I went to my primary care doctor, who sent me a GI specialist. In June 2006, I was diagnosed with ulcerative colitis. Because the disease was only in one part of my colon, it didn’t meet the criteria for Crohn’s disease, which can occupy any part of the GI tract.

Working Myself Sick

I was working a high-pressure job with pretty extreme hours. The stress of my job was making me sicker and sicker.

I had constant diarrhea. I was bleeding. The only way I could eat was through a PICC line in my arm. By early 2008, I was down to just 85 pounds.

My disease had progressed to the point where I needed surgery. Without it, there was a good chance I’d die. I had emergency surgery to remove my colon on July 4, 2008, which left me with an ostomy bag on the outside of my body to collect waste.

It was a rough few years. I started to develop hard growths called nodules on my skin. I had eye issues and joint pain. Everything in my body hurt. At the end of 2011, I developed my first fistula — an abnormal tunnel between my rectum and vagina that was caused by inflammation.

My doctor told me they thought I actually had Crohn’s disease, not ulcerative colitis. For the next four years, I was in and out of surgery. I developed several more fistulas. One was so close to my spine that it threatened to paralyze me.

In the spring of 2015, my doctor put me into a clinical trial for a new biologic drug. It took several months to work, but it closed up my last fistula and put me into remission for the first time in 10 years.

Managing Crohn’s Disease on the Road

In 2016, I started volunteering with the Crohn’s & Colitis Foundation, co-facilitating their Women’s Support Group. That’s how I became an advocate. Over the years, I’ve learned a lot about my disease and how to manage it.

One of the hardest things about living with Crohn’s is the constant urge to have bowel movements. My doctors prescribed anti-diarrhea medicines, but I also discovered a few tricks on my own.

I found that sitting on a heating pad or in a warm sitz bath prevents the muscle contractions that give me that urgent need to go. When I ride in a car, I sit on a cushion to prevent the urge.

Another thing that has helped is deep breathing and meditation. I’ve had to do a lot of that to calm myself down. I find that constantly thinking about my disease makes it worse. Focusing on something else helps.

For a long time, I had such severe bathroom anxiety that I wouldn’t leave the house. I discovered that I could get out as long as I packed a bag in case of accidents. I wear a diaper and bring along extra diapers and underwear. I also carry baby wipes and cream to prevent irritation. And I locate the nearest bathroom at my destination and rest stops along the way before I leave.

I also carry snacks with me. Having to go to the bathroom constantly can leave you feeling hungry.

I sometimes travel to conferences around the country and overseas. I pack everything I think I could possibly need when I go. Because I had an ostomy, I need to carry a lot of extra supplies. I’ll make sure I have 2 weeks of medication. I always double the amount I’d normally need for the length of time I’m traveling. You never know when you might get stuck.

I also carry a letter explaining that I have an ostomy device. It helps when I have to go through airport security.

Getting My Health Back

Twenty surgeries and a few near-death experiences later, I’ve finally been able to get some semblance of my life back. I’m working toward my Master of Public Health degree.

My Crohn’s disease seems to be in remission. Although my health still isn’t perfect, it’s much better than it was. Over the last 15 years, I’ve learned a lot from having IBD. Most of all, I’ve learned that you can’t take a day of life — or a day of health — for granted.

By Ryan Ungaro, MD, as told to Barbara Brody

Back when I was in medical school, I decided to specialize in gastroenterology because I thought it was a  fascinating field. I still do. Inflammatory bowel disease (IBD) patients, including those with Crohn’s, are particularly rewarding to treat because I really get to know them and support them closely over many years. It’s my job to usher them through difficult times and get them back to enjoying a good quality of life.

As director of the Comprehensive Care for the Recently Diagnosed IBD Patient (COMPASS-IBD) program at Mount Sinai in New York, I see many people who have only recently learned that they have Crohn’s. Often these patients have classic symptoms, which include diarrhea, abdominal pain, and urgency. But many don’t realize there are a number of Crohn’s disease symptoms, and potential complications, that aren’t so obviously tied to the digestive system

Body-wide Issues

Crohn’s disease is an inflammatory condition. That inflammation primarily affects the intestines. But fever might be a sign of Crohn’s, particularly when it happens in conjunction with other symptoms. Fever suggests systemic inflammation, which could be stemming from inflammation in the bowel.

Unexplained weight loss can also be a symptom of Crohn’s because body-wide inflammation has the potential to speed up your metabolism. Meanwhile, people with Crohn’s often lose weight if they aren’t absorbing nutrients like they should. That’s most likely to happen when the bowel gets ulcerated or inflamed or because you have chronic diarrhea.

For that reason, weight loss could indicate new disease (in someone who hasn’t yet been diagnosed) or be a sign of a flare up in someone who’s been living with Crohn’s for some time. In other cases, patients lose weight simply because they’re eating less in an effort to avoid triggering or worsening their GI symptoms.

Fatigue is another common complaint among people with Crohn’s disease. It may be linked to inflammation, but we also see it in many patients who seem to have their disease well-controlled. This is an active area of research, so hopefully we’ll know more about why this happens in the future.  

Non-GI Complications

When someone has severe Crohn’s disease or is experiencing a flare, it isn’t only their digestive system that’s in trouble. Some people with Crohn’s develop eye problems such as episcleritis, scleritis, and uveitis, which are different types of eye inflammation. They can cause redness and vision trouble.

Inflammation associated with Crohn’s can also lead to skin symptoms, like tiny red bumps (erythema nodosum) or sores (pyoderma gangrenosum) that appear on the arms or legs.

Another possible complication is a disease of the bile ducts called primary sclerosing cholangitis. It’s more common in people with ulcerative colitis (the other type of IBD), but it does occur in some people with Crohn’s.

Crohn’s and Other Autoimmune Ailments

Crohn’s disease is an autoimmune condition. It happens when your immune system mistakenly attacks itself or responds inappropriately to a perceived invader. If you have one autoimmune disorder, the risk of having another goes up. Crohn’s disease frequently overlaps with inflammatory forms of arthritis, especially ankylosing spondylitis, a condition characterized by inflammation in the joints of the lower spine and pelvis.

Psoriasis, an autoimmune disorder known for causing skin scaly patches, is also fairly common among people with Crohn’s.

When someone with Crohn’s develops joint pain or skin problems, we often loop in a dermatologist or rheumatologist to tease out what’s going on. Sometimes the symptom turns out to be a complication of Crohn’s, but you can’t always chalk it up to underlying GI disease. Someone who turns out to have inflammatory arthritis or psoriasis may need specific treatment for those issues, in addition to the treatment they’re getting for Crohn’s.

The Importance of Personalized Care

No two people with Crohn’s are alike, so treatment needs to be individualized. One of the things we consider when figuring out how to treat someone is whether or not they have extraintestinal manifestations. That means symptoms or problems that aren’t limited to the gut.

For instance, someone who has Crohn’s as well as psoriasis might be able to take a medication with broad anti-inflammatory action that helps both conditions. Another person with Crohn’s symptoms that are confined to the GI tract might be better off with a drug that specifically targets inflammation in the gut.

I’m particularly interested in learning more about how to match each patient with the best treatment for them. At the moment, I’m conducting research funded by the National Institutes of Health aimed to predicting which patients, from the time of diagnosis, are likely to have a mild disease course versus a more severe disease that’s likely to lead to serious complications or require surgery. Right now it’s often a guessing game, but if we can figure that out early on (using blood or intestinal biopsy markers) it will help us determine who needs the most aggressive treatments to keep their entire body as healthy as possible. 

Your eyes have gotten super dry and irritated, and it hurts to move them. Or they’re red, watery, and swollen. Maybe you’ve been dealing with all of the above. You may have noticed your eyes look like they’re bulging more than before. In recent photos, you always seem to look startled. Maybe you’ve even had blurred or double vision. You know it isn’t allergies, but you can’t figure out what’s going on.

It’s possible that you have thyroid eye disease. And if you have an autoimmune thyroid disease, especially Graves’ disease, this is even more likely. That’s because around 90% of thyroid eye disease cases are seen in people with Graves’ disease, explains Christian Nasr, MD, an endocrinologist and medical director of the Thyroid Center at Cleveland Clinic.

What Is Thyroid Eye Disease?

Thyroid eye disease (TED) is a rare autoimmune disease that affects the eyes. TED causes swelling, inflammation, and damage in the muscles and tissues around the eyes. “The majority of cases are mild,” says Raymond Douglas, MD, PhD, an oculoplastic and orbital surgeon practicing in Beverly Hills and director of the Thyroid Eye Disease Program at Cedars-Sinai in Los Angeles.

Symptoms can vary, but they include:

• Redness
• Dryness
• Discomfort
• Pain behind your eyes
• Irritation
• Eyelid retraction (when your eyelid doesn’t close all the way)
• Bulging eyes
• Feeling like there’s something in your eye
• Blurry vision
• Double vision
• Bloodshot eyes
• Eyelid swelling
• Constant watering of the eye
• Headaches
• Eye socket pressure or pain

Who Gets TED?

TED usually happens in people who have Graves’ disease. Graves’ disease causes your thyroid to make too much thyroid hormone, a condition called hyperthyroidism. “About half of patients with Graves’ disease will develop thyroid eye disease,” Nasr says. He adds that most cases of TED happen within a year to 18 months of developing Graves’ disease.

About 80% of people who come in with TED have already been diagnosed with Graves’ disease, Douglas says. Around 10% are diagnosed with TED before Graves’. Another 5% of TED cases are in people with Hashimoto disease, Nasr says. In this condition, your thyroid doesn’t make enough thyroid hormone, a condition known as hypothyroidism. Though it’s rare, Douglas says some people with TED don’t have a thyroid condition at all.

Thyroid eye disease is more common in women than in men. But when men develop TED, it tends to be more severe. Douglas says cases of TED peak around ages 40-50 and again around age 60.

What Is the Link Between TED and Hyperthyroidism?

Three conditions can cause hyperthyroidism. One is Graves’ disease, the most common one. The others are thyroid nodules and toxic multinodular goiters. “Graves’ disease is the only condition where you can see thyroid eye disease associated with high levels of thyroid hormone,” Nasr says.

Both thyroid eye disease and hyperthyroidism are immune system disorders. “From what we know, there are two receptors that seem to be the culprit,” Douglas says. One is the thyrotropin (TSH) receptor, which is mostly on thyroid cells. The other is the insulin-like growth factor (IGF-1) receptor, found mostly on the cells around the eyes. These two receptors sit next to each other, he says, and appear to be linked.

Experts don’t understand why, but the immune system starts to attack these receptors. When it attacks the TSH receptor, this causes too much thyroid hormone. “It’s like turning up the thermostat way too high,” Douglas says. When the immune system attacks the IGF-1 receptor, it increases the amount of IGF-1. The cells around the eyes get fat, divide, and accumulate extra scar tissue, causing thyroid eye disease.

If you have Graves’ disease, certain things can make your risk of developing thyroid eye disease higher. These include:

• Having a family history of TED
• Smoking
• Being female
• Getting radioactive iodine treatment
• Older age
• Stress
• Poorly controlled thyroid

What Are the Complications of TED?

TED can affect the two most important parts of the eye: the cornea and the optic nerve. “We make sure that both of these are monitored,” Nasr says.

Some of the possible complications TED can cause include:

• Bulging eyes
• Pain
• Scratched cornea
• Extreme dryness
• Severe headaches
• Trouble blinking
• Eyelids not closing completely
• Restricted eye movement
• Double vision
• Increased pressure in the eyes
• Blindness (rare)

Nasr tells his patients to call immediately if they see a dark spot in their vision field or multiple bright lights off and on. This might indicate optic nerve damage.

He says it’s also important to call right away if you have severe pain or severe redness around your iris (the colored part of your eye). This could mean your cornea is damaged.

Who Treats TED?

Both doctors say treating thyroid eye disease involves an integrative approach. Experts on your care team may include:

• Endocrinologists
• Ophthalmologists
• Oculoplastic surgeons
• Neuro-ophthalmologists

“It’s really a team approach between primarily endocrinologists and oculoplastic surgeons,” Douglas says. Many people start with their ophthalmologist to figure out what’s going on. “Then, depending on the severity, they’ll be sent to someone like me, an oculoplastic surgeon, who will then talk to them about medical therapies versus surgical therapies,” he says.

Many general ophthalmologists are comfortable monitoring mild TED, too, Nasr says. They can keep track of your eye pressure, check your corneas, and do tests to make sure your optic nerve is in good shape.

Nasr also works with neuro-ophthalmologists to monitor the optic nerve. “Once in a while, we use strabismus specialists to work on correcting muscles to minimize double vision,” he says.

What Should I Do If I Think I Have TED?

Plenty of people chalk up their eye issues to aging or allergies, Douglas says. And even when they try to find out what’s wrong, they may be told it’s just allergies. If you notice your eyes bulging, vision changes, or your eyelids aren’t closing all the way, Douglas advises seeing your doctor. “Don’t just settle for an unsatisfactory answer,” he says.

Nasr makes a point of asking all his patients who have autoimmune thyroid disease if their eyes are dry, uncomfortable, or if they have pain behind them. “Dry eyes are probably the most common symptom in patients who have thyroid eye disease,” he says. But since dryness can be subtle, it can go unnoticed.

If you already have thyroid disease, you should be seeing an endocrinologist anyway. They will continue doing what they do best — keeping your thyroid well-controlled. Nasr does a thorough eye exam every year. He uses a special instrument to measure how much the eyeball is protruding. Your endocrinologist can refer you to another expert for treatment if needed, too.

Maybe you don’t have a history of thyroid disease. In this case, your best option is to see an ophthalmologist. They will be able to diagnose TED. You’ll also need to have your thyroid levels checked by your primary doctor or an endocrinologist. This is because chances are high that you also have undiagnosed Graves’ disease.

It’s rare, but you may have TED with normal thyroid hormone levels. But even if they’re normal, you’ll need to have your levels checked regularly over the next year or two. This is because you could develop Graves’ disease during that time.

By Steven Reinberg 

HealthDay Reporter

FRIDAY, Oct. 21, 2022 (HealthDay News) — Victims of sexual assault are seeking treatment in U.S. emergency rooms in growing numbers, with University of Michigan (UM) researchers detecting a 15-fold increase between 2006 and 2019.

Rapes and other forms of sexual assault occur every 68 seconds in the United States, and their number rose from 93,000 in 2006 to nearly 140,000 in 2019, according to data from the U.S. Federal Bureau of Investigation.

The increase in people seeking emergency medical care after sexual violence, however, is greater than the growth of those turning to the police for help, the study authors said.

And while there are more sexual assaults occurring, greater awareness and hospital coding changes are also contributing to the spike, the researchers noted.

“Overall destigmatization — whether that’s due to the Me-Too movement or other social-political movements — have made people feel safer coming and seeking care,” said lead researcher Emily Vogt, a UM medical student.

It’s not clear if people who go to the ER after a sexual assault are not going to the police, Vogt added. Perhaps “they feel like that’s the only place they can go,” she said.

For the study, Vogt and her colleagues used data from millions of emergency department visits. They found that in 2006, more than 3,600 men and women aged 18 to 65 sought emergency care following a sexual assault. In 2019, that number jumped to nearly 55,300. (For support, contact RAINN, the Rape, Abuse and Incest National Network hotline).

Vogt’s team found that those seeking ER treatment were disproportionally younger women and poorer.

However, despite the rise in ER care, hospital admissions after a sexual assault decreased by 8% — from just under 13% to 4%. Most patients (95%) were sent home, the findings showed.

Admissions may have dropped because of lack of insurance, fewer empty beds, or victims not wanting to be hospitalized due to privacy concerns, Vogt said.

Patients who were admitted tended to be poorer and have Medicaid. Victims aged 46 to 65 were also more likely to be hospitalized than younger people, possibly because the assault exacerbated other medical conditions, Vogt said.

Overall, emergency department visits increased by 23% during the same period, with sexual assault accounting for less than 1% of visits. Yet hospital charges for sexual assault visits topped $233 million in 2019, up from $6 million in 2006, the researchers reported.

ERs can do better in helping patients after a sexual assault, Vogt said. “The emergency department, even though it’s a better place to go than nowhere, is probably not the best place. We need better kinds of outpatient care,” she suggested.

Vogt anticipates sexual assault numbers will continue to swell. “We didn’t even get to look at the years of the COVID-19 pandemic, which we already know from other studies has certainly increased rates of sexual assault,” she explained.

“A lot of these patients are getting sent home, and it’s unclear whether they are getting the attention they deserve,” Vogt said. “We know these patients are at higher risk for [post-traumatic stress disorder], substance abuse, and psychiatric problems as a result of the trauma they’ve experienced.”

The report was published online Oct. 20 in JAMA Network Open.

Dr. Elizabeth Miller is a professor of pediatrics at the University of Pittsburgh School of Medicine. She said sexual violence remains a significant public health concern.

“Sexual violence reporting and care-seeking is not evenly distributed across populations, and inequities persist,” Miller said. “The health consequences of sexual violence remain underrecognized by our health system, especially among survivors who are marginalized because of sexism, racism, heterosexism and ableism,” added Miller, co-author of an accompanying journal editorial.

Miller agreed there is both increased awareness of sexual violence and growing incidence.

“As a result of lots of community campaigns to make the experiences of sexual assault more visible, more people appear to be seeking care. But it does appear globally, we saw an increase in interpersonal violence, including childhood sexual abuse, sexual assault and intimate partner violence during the pandemic,” she said.

And, she pointed out that people who are already marginalized because of gender identity, sexual minorities, females and people with disabilities experience higher incidences of sexual violence.

Miller added that survivors of sexual assault should expect to be treated with respect by law enforcement and by emergency room staff. “They should know that they can also ask for a trained sexual assault nurse examiner, and they can also ask for a victim services advocate to be present during a forensic exam,” she said.

However, more is needed to improve survivor-centered care in ERs. “We need to understand how best to provide meaningful support for survivors and to not contribute to retraumatizing individuals who have experienced an assault,” Miller said.