Scleroderma: Horrible Disease, Rare Gift
Diseases
Chronic Pain, Rare Disease, Skin Disease
Issues and Challenges
Demi has encountered: Rare / Underserved Disease, Invisible Illness, Underserved Community
My Story
My name Demeshia Montgomery and I would like to share my story with you. I had twins a boy and a girl at 19 years old. They were 1 pound babies and had truncus - they were 27 weeks early. My daughter made it to 6 months old, had one operation on her heart and three months later had been hospitalized for three weeks before being sent home on oxygen. She passed the same day she was sent home. My son went on to have 3 total heart surgeries. He passed during the last surgery. I was truly devastated.
Exactly one month later I began having really extreme pain in my fingers. I also had a black mark on my arm (which I thought was a bruise). This pain in my hands went on a while till I just couldn't take it anymore and went to a dermatologist. While I was there she did a skin graph and told me we would get the results in a few days. The results came in and she informed me I had morphea ( which is a lesser version of scleroderma). She then referred me to a rheumatologist. I was scared and didn't visit the rheumatologist for another 5 months. By the time I did my hand had gotten so stiff I could barely make a fist. It reminded me of a claw and I had several sores on it. Needless to say I was scared out of my mind.
At my appointment with the rheumatologist I learned I had Scleroderma with Raynaud's Syndrome. I was warned that "I better get ready to feel some of the worst pain ever". There was no treatment just preventive care. I left there feeling terrified. I then started my journey to find out exactly what scleroderma was. That's when I discovered the scleroderma foundation and began attending support group meetings.
Penny Davis was getting a proclamation from her city every year and encouraged me to do the same. So I began getting proclamations annually from my city about 3 years later. For the next ten years my hands contracted more and more until my left hand was locked in a claw position. The ulcers kept coming eating more and more of my finger tips. At about 29 years old I got pregnant again when I was about 4 months I felt horrible and went to the emergency room. There I learned the baby had died and they would have to induce labor. The hospital then informed me the baby had Daddy Walkers Syndrome.
By this time I had been attending scleroderma support group meetings for about 10years. I truly felt no one understood, my family either acted like nothing was wrong with me or they shamed me by saying I had AIDS. By this time my skin was a black color with light blotches spread all over. I felt ugly and isolated. Then I began having ulcers that would get infected. My left hand thumb was first and got gangrene in the tip and had to be removed. This also happened to 4 more of my fingers and a toe. My elbows also tightened and ate themselves off to the bone. Leaving one of my arms unbendable. My knees and buttocks began getting calcium rocks. Some so big I had to get them surgically removed.
I had really began getting heavily involved with advocacy for scleroderma. This helped me to cope with the continuous pain and calcium rocks that seemed to be covering my whole body. I was now getting proclamations from 2 cities annually and had began training to be a support group leader for the Arthritis Foundation. After loosing several scleroderma friends to the disease I decided more awareness was needed. That's when I found a co-sponsor (Senator Bill Beagle) to declare June Scleroderma Awareness for the whole state of Ohio. Bill 133 was passed into legislation in 2016 and made Ohio the first state to have a bill for scleroderma awareness month.
During this time my foot began showing signs of lack of blood flow. Which ended with me loosing my pinky toe. Then I made a request to David Murad from the scleroderma foundation. I asked if he would help me to get bills passed in all 50 states. He then informed me that proclamations was better because we could request them every year and request that the governor's present them to the requester with a ceremony. They also didn't require so much time to get done.
In 2019 a proclamation guide was created with a team of scleroderma advocates. They all believe in my dream and were active in their own state bring awareness. At the beginning of 2020 we began looking for more scleroderma advocates to cover all 50 states. The hopes are in June of 2020 we will have Scleroderma Awareness Day proclamations in all 50 states. More recently I have begun leading a national grassroots effort to get proclamations and building lightings from cities throughout the US on top of the state proclamation project.
I tell you this story to share how a disease so horrible can be a gift at the same time. Over the years I learned to turn my grief, frustrations and fear into a motivation. Now at age 40 I'm determined to help bring awareness I advocate for research funding for rare diseases. I pray that the patients being newly diagnosed will have more information, treatments and knowledge available to them then I did. If sharing my story comforts even one person, then all the pain was worth it. I would like others to know it's not a death sentence but a opportunity to experience life in a different way. If you believe you can succeed!!!
My Motivation and Inspiration
My motivation is my husband and stepdaughter. They both have sacrificed so much for me to be able to live a normal, comfortable life. I feel that it is my duty to be strong and put up a good fight! They inspire me to be the best at what I can still do and to continue to learn more ways to advocate for myself and other that suffer from disabilities. Their love for me gives me the strength to smile and push forward and to continue to Dream!
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