Elie's Story
Tuesday, December 3, 2013
By: Jocelyn Bailey

Elie Ramia's parents Terri-Jo and George Ramia noticed something strange on her leg at age 3. This is the story about Elie's scleroderma told by Terri-Jo Ramia.

When Elie was a little over 3 1/2 years old, I noticed what looked like a bruise down the back of her right calf. I showed a few family members and each of them were as puzzled as I was. So, I made an appointment at the pediatrician. After looking at it, he diagnosed it as eczema. I love my kids’ doctor, but, this was not eczema. I decided to pursue it with a dermatologist towards the end of 2011. It took over 2 months to get in to the dermatologist so we waited. Finally, just shy of Elie’s 4th birthday we went to see her. After careful consideration and examination, she diagnosed it as a birthmark under her skin. She said it ran in a “linear” pattern. This made much more sense to me. So satisfied, I left, happy to finally have an answer. 

In May 2012, I noticed something looked different with her right foot. It looked “thicker” than her left and there was a loss of pigment on her ankle. A different doctor saw us this time and  determined it was something in the “derm” of her foot, and sent me back to the dermatologist.  The next available appointment to see the dermatologist was in October. We left the office feeling helpless and scared. My husband, George, who worked in orthopedics at that time, called a foot specialist he knew. They said to bring her right over. The doctor who saw her looked, took x-rays, and looked some more. He also reassured us it was in the “derm” and her foot looked structurally fine. He said he wanted to see her in 4 weeks. We left with no diagnosis, but, feeling a little better having had the x-ray and knowing it wasn’t some kind of tumor, which of course is immediately where my mind went!

We made it our mission to find a new dermatologist that could see us before October. George started calling places out of town and came across a doctor who was a fellowship trained pediatric dermatologist! She could see us in 2 weeks. So we waited...Even though it was only 2 weeks, the white spots were spreading like wildfire. It was like every day there were new ones and now she had a significant white spot on the top of her foot and it extended all the way up to her knee. She also had a spot brewing on her stomach. As you can imagine, we were freaking out and had no idea what to expect.After her examination, the doctor said the words we were dying to hear. “I know what it is”. As happy as I was to hear that, I was afraid of what she was going to say next. She proceeded with, “I have only seen this twice, during my fellowship” “Really? Twice? Oh my God!” I thought.  “It is something called linear scleroderma”she said. There’s that word linear again.  Although, I didn’t know exactly what it was, when I heard the word scleroderma I almost fainted. The doctor quickly explained what it meant. That it was something very rare and that mostly children suffer from the condition. She also said “It only affects the skin and it usually burns itself out in 3-5 years.” Our prescribed treatment was steroid cream twice a day. From the beginning, that didn’t set right with me. There had to be something more than a cream to fight this. I was on a mission!

Once we arrived home, I raced to the computer and started reading. During all my research, I kept reading about Dr. Thomas Lehman at the Hospital for Special Surgery and the amazing things he was doing. We called for an appointment knowing we may not be able to see the leading physician in his field.  I figured it would be months; wrong! He could see us in 1 month! On September 11, 2012 we made the 3 hour drive to NYC to meet what I now refer to as the “Scleroderma Savior”. He confirmed what we already knew; linear scleroderma. Finally, almost a year after we began, we had a complete diagnosis. Knowing felt great, but fear of the unknown felt awful. And so our “living with scleroderma” journey began.

On the whole Elie is a trooper.  Although she has scleroderma, she is no different than any other 5 year old. She loves to play games and American Girl dolls. She loves to play dress up and have her nails painted. In addition to dance, she is just finishing up her first soccer season. Her leg is significantly smaller than the other  and has less muscle strength, but, she just goes and goes. She also has some major discoloration, which the doctor assures me will heal over time. She is very forthcoming about having Scleroderma and has no problem “explaining” it to people who ask. She started kindergarten in September and is joining a Daisy Troop in November. 

One of our greatest blessings, since her diagnosis, was the Scleroderma Walk in June. We had planned for the 4 of us to walk, but, as we started telling people about it, they wanted to join us. First it was 10 people, then 20, then 30. We ended up with over 50 walkers. I can’t tell you how it made us feel, a huge crowd, in teal t-shirts with Elie’s name on it, supporting our little girl. Every time I think about it, I just cry. Elie won the award for the most money raised, by an individual. She received a beautiful star trophy which is proudly on display in our living room. 

Although, it can be difficult, we believe everything happens for a reason. We don’t yet know what that reason is, and we may never know. For now, we try and spread the word about this disease whenever we can. I think if people can put a face to the disease, especially the face of a child, they will sit up and pay attention. If we can help other children to be diagnosed, then it is worth it.Elie is a very happy girl, with the whole world at her fingertips. We pray her “burnout” comes quickly and leaves minimal damage in its wake. At the end of the day we are just her mom and dad trying to do our best.