Patient Insights: Eczema
Ellen Scheib has had eczema for over twenty years, and though drugs have helped her manage the condition there are still many patients with no viable treatment options. She tells us what it’s like to live with eczema and how advocacy can bring hope to people with the skin condition.
How does eczema affect your daily life?
Eczema is extremely dry skin that gets itchy, scaly, red and swollen. When you scratch it, it bleeds and your skin starts oozing.
It’s a very social disease – when you have lesions all over your body you certainly don’t want to go outside and show your skin. I live in Fort Lauderdale, Florida, where the average temperature is 80 degrees Fahrenheit, but I always have to wear long clothes. People stare at you because either you have your lesions showing or you’re dressed like you’re expecting snow.
It took up until two years ago to get a 100% certain diagnosis. Often my skin biopsies would come back showing psoriasis – which is kind of a sister disease for eczema, but one that affects you differently, meaning different medications work for it.
For a while they were treating me for psoriasis with shots I would give myself, which did not help at all.
At one point they even said my biopsy showed T-cell lymphoma, and I was treated with a cancer drug that I took every day for a year.
When I was going in and out of hospital, I would be covered with lesions from my neck down to my toes that were itching, bleeding and oozing. They’d put me on IV steroids, then send me home. But the thing about steroids and eczema is once you come off them you flare even worse. For 20 years I was in the cycle of flare, hospital, flare, hospital, flare, hospital.
“At one point they even said my biopsy showed T-cell lymphoma, and I was treated with a cancer drug that I took every day for a year”
There were days I didn’t want to wake up – you never know when you go to bed what your skin is going to look like the next day.
Two years ago I went to a new doctor who took more biopsies and figured out that I definitely had eczema. That has allowed me to get treatment that has eliminated the problems with my skin.
What are some of the biggest misconceptions about eczema you encounter?
The biggest misconception is that people think it’s contagious, and when they see it they want to stay away from you. To be honest, if I didn’t have eczema it would probably scare me to see someone with it too.
Another big struggle is that people call it a rash. It’s infuriating to be asked how my rash is when my entire body is covered in lesions.
How did you get into patient advocacy?
My daughter has had ulcerative colitis since she was six, so I learned to be an advocate firstly for her and then for myself.
I talk a lot with other patients on Inspire. I feel that the best way you can support somebody is to share your own story and listen to theirs, then share ideas and support each other as much as you can. The support we all have for each other is amazing.
I know that suffering alone is a horrible thing. If you don’t have a disease, you don’t understand it. It’s hard to be truly empathetic towards people.
When I see posts from people who are really suffering, I will reply and offer them my personal email address.
It really helps me too, because I have people to speak to if I’m having a bad day and my skin looks horrible.
One of the guys we met on Inspire is suffering terribly, but where he lives in Africa there’s no medicine that can help him. His wife left him because of his eczema.
It’s really hard supporting someone who you know is in such a desperate situation. We email him every day and see how he’s doing. I’ve made it my goal to make a difference in someone’s life every day. It just makes me sad that I can’t do more.
What would you say are the biggest unmet needs in eczema at the moment?
I’m one of the fortunate ones who has been a true success story on Dupixent, but there are many people out there for whom it doesn’t work or who are afraid to take it because of the side-effects. And everyone I’ve heard of who has the side effects immediately stops taking the drug.
I try to be encouraging to someone who’s on the fence, tell them that they won’t know if it’s going to work unless they try it.
The problem is that Dupixent is the only drug right now for eczema, but so many people are experiencing side-effects that it’s not enough. I see new drugs for psoriasis coming out all the time, but Dupixent is the first drug for eczema, and we need more.
Meanwhile, a lot of dermatologists are more into beauty than skin diseases, and I think that’s why a lot of people are not treated properly. Until I found my current dermatologist, I felt like every office I went into would be filled with beauty products, and they would just tell me there’s no cure and give me more steroids. They just aren’t treating eczema.
“A big struggle is that people call it a rash. It’s infuriating to be asked how my rash is when my entire body is covered in lesions.”
Is there a need to get more information out there to both doctors and eczema patients so they know what to look out for and where to go for help?
Definitely. A lot of people are either too shy or afraid, or just aren’t aware that the resources are out there. It would help patients know what questions to ask their doctor, what to look for when they’re choosing a dermatologist, etc.
Is there any advice you’d give to someone who’s just been diagnosed with eczema?
I’d want them to know that there is hope out there, that there is support out there. They need to find a good dermatologist who’ll diagnose and treat them properly. If somebody on Inspire says they’re in a certain area and they’re looking for a doctor, I try to research that and offer resources.