My Battle With Scleroderma…Cj’s Story

June is Scleroderma Awareness Month. In honor of Scleroderma Month I am being called to share my story, so that my pain has a purpose for ALL the Scleroderma Warriors out there battling this horrific disease with me.
Scleroderma AKA Systemic Sclerosis is a rare autoimmune illness involving the connective tissue. It is caused by excessive production of collagen, from an unknown cause. Most people are not familiar with it, but unfortunately my family and I are very familiar with this debilitating disease. I have been very private about my diagnosis and treatment, because its hard to tell people you’re sick. Most people don’t know how to react in a supportive way. Also I’m not someone who likes a lot of attention and I do NOT like asking for help, I’m an introvert nowadays. I mostly keep my problems to myself and my Husband, who is my ROCK and the best care taker I could ever imagine.
My family and I went through hell and back in more ways than a Global Pandemic in 2020. I nearly lost the use of my hands due to Sclerodactyly (part of the disease that causes atrophy, skin tightening, tendon shrinkage and hardening of the connective tissue in your hands and wrists, which causes your fingers to curl up, but you can’t make a fist either, they’re just stuck.) ?? I almost couldn’t lift my arms over my head to wash and blow dry my hair because my arms felt like they were strapped down, My muscles became weak and lost endurance, I lost the ability to squat down to the ground at all, my ankles and knees just wouldn’t bend they were so swollen and painful, my elbows wanted to lock in a bent position (contractures), opening a bottle, cooking or cleaning was out of the question. Not easy for a full time homemaker. I have dealt with excruciating arthritic pain all over my body making it hard to even take a step out of bed, hellacious swelling and inflammation, not to mention debilitating fatigue and brain fog. I was nearly bed bound for about 5 + months. I literally prayed to God daily not to take me away from my Daughter because I felt like I was going to die.
The pain and suffering it causes, if untreated, is unreal!!! Even with treatment you’re not out of the woods completely and still suffer symptoms. My official devastating diagnosis came from a specialist at UCLA in August 2020, approximately a year and a half after the worst symptoms began, when my body became debilitated. It was a long process to get to UCLA with a few other Doctors and diagnosis in between. Dr. Bowman: Functional Medicine MD found some underlying bacterial, viral and parasitic infections (Lyme Disease, EBV and Babesiosis) that needed to be treated (this was very helpful, but the treatment was hell to endure but so worth it!!), Dr. Dreyfus: My Dermatologist was the first to biopsy and diagnose the Localized (skin involvement) part of my disease called Morphea and send me to a Rheumatologist. Dr. Kelly: General Rheumatologist who was hugely helpful in getting me into UCLA and FAST because my disease was progressing so rapidly, Dr. Thompson, My Osteopathic Doctor and last but certainly not least Jodi, Nick, Julien and Amy, my Occupational and Physical Therapists are all my angels here on earth and have played big roles in my medical journey to where I am now. ?? Not to mention, my Sister-in-law, Heidi who is a PT herself, she was familiar with what she saw my hands doing and advised me to seek occupational therapy asap, before I was even diagnosed!! Thank God, because it saved my hands from permanent damage.
I had no idea what was happening to my body but I knew it was bad. Its a difficult disease to diagnose because the long list of symptoms can involve such a wide range of systems in your body, so its hard to pinpoint. The Sclerodactyly and Morphea was the tall-tail signs that it was Scleroderma in my case. There is not a Scleroderma Specialist Rheumatologist here in Las Vegas, NV so my AMAZING Husband takes me to the University of California Los Angeles to visit my AMAZING Specialist, Dr. Volkmann. ??‍⚕️ I am blessed with the best, and very thankful to be where I am today after an entire year of Occupational and Physical Therapy, plus the use of Immune Suppression pharmaceuticals (started during the pandemic) to try and stop the course of the disease. I did end up getting COVID thrown into the mix as well back in October.
On a lighter note, It is believed that my disease was caught early, so my treatment can hopefully keep my body from becoming permanently debilitated. I am happy to share that the things that were debilitating me physically have improved with treatment, my hands are back to flat, not curled and I can almost make a complete fist ?? again. I am also kind of regaining the ability to squat again, not everyone is able to gain back what they have lost, so I am beyond grateful for my progress. Thankfully for me the treatment is helping but there is still no cure and I still battle things on a daily basis. I’m not asking for anything, but AWARENESS and prayers are always appreciated!! ? I have had some awesome prayer warriors behind me. My amazing God, Husband, Parents, Daughter, and Doctors helped get me through the hardest time of my LIFE!! I can endure just about anything with a little faith and them by my side. It’s amazing what you can overcome when quitting is not an option. If you made it to the end, Thank You for reading my short version of the story. Please share with me if you or someone you know has Scleroderma. We have to do better to get the awareness and funds for the research needed to find a cure for this relentless disease. Also, please keep in mind that majority of people are battling something that you know nothing about, so just be KIND! ????
More about the disease in general:
Systemic scleroderma can affect the connective tissue in many parts of the body. It can involve the skin, esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. The tissue of involved organs become hard and fibrous, causing them to function less efficiently. Its a very complex disease involving many systems because the majority of your body is made of connective tissues. There are two subtypes one is Localized and the other is Systemic ( I have both). There are two different courses that the disease can take if it is also systemic, either diffuse or limited cutaneous. Diffuse scleroderma causes skin thickening that occurs more rapidly and involves more skin areas than in limited disease. In addition, people with diffuse scleroderma have a higher risk of having internal organ involvement. For my case, at this time, it is not clear if I have Diffuse or Limited Scleroderma, so it is categorized as Systemic Sclerosis, with Localized Morphea as well.