Dermatomyositis may be a rare disease, but no one needs to experience it alone

“They thought it was lupus, but within 4 or 5 months, they were able to narrow in on dermatomyositis… and that was the beginning of my journey.”

Contenido en Español

“Lo que siempre les digo a mis pacientes es que vamos a comenzar despacito…haciendo investigaciones, dándole tratamiento, con tiempo nos mejoramos . Necesitamos la paciencia de los pacientes y el entendimiento que es una condición que puede afectar tantos órganos.”

“At one point I was breaking out in these rashes from my neck down, and I remember my legs just being bright red, so uncomfortable and so itchy. I was able to get in to see the dermatologist. He knew what was happening wasn’t just some blip, that it was something much more serious.”

“I wish I knew that it was painful. This is daily painful and mentally draining. You are constantly wanting to do what your body won’t allow you to do. So that’s very difficult most days.”

“While there isn’t a cure for dermatomyositis now, at least we have many more treatments than we used to have, and there is a lot more knowledge and a lot more information about those medications”

“It makes me emotional…You want them to remember how powerful they are and how important they are.”

“It is important for patients who have dermatomyositis to see a dermatologist. There are a certain percentage of DM patients who predominantly have skin manifestations and skin inflammation without involvement of other organ systems. Additionally, dermatologists can play a key role in making an accurate diagnosis.”

“I just couldn’t swallow. My body, my mind…I just didn’t know how to do it. I had the typical signs – I had the redness, the puffiness, the swelling on my cuticles. They automatically diagnosed me with dermatomyositis.”

“We talk a lot about things that might seem scary, but for most folks, those things haven’t actually occurred yet. We are going to screen for things regularly. We are going to catch things early. And I think that’s a sense of comfort for folks. We understand the disease.”

“Back then no one was really looking for dermatomyositis… The doctor’s first words – I’ll never forget them – were, ‘maybe you are working too hard and you ought to take it easy…’ I knew that something was wrong.”

“So having an autoimmune disease, it’s teamwork…And [patients], by working with their therapist, with their rheumatologist, neurologist, they can actually have a very good quality of life. It’s important to work in a partnership.”

“Its been a challenge trying to make new friendships, but I have thanks to MSU and the support groups. It really makes a difference to have people listening and not trying to fix you. Just listening to allow you to get it out”

“Describing dermatomyositis to someone who has never heard that term before can be challenging and overwhelming for patients. I break it down by describing it as an autoimmune disease that primarily affects skin and muscle: ‘Dermato’ meaning skin, ‘myo’ meaning muscle, ‘itis’ meaning inflammation”