Scleroderma and the Modern C.I.C
I'm a 32 year old woman living with Scleroderma (systemic sclerosis w/ lung involvement). I would like to share my story so other young women know they aren't alone. I "chronicle" my disease by writing/blogging; as it's very cathartic!!
I was diagnosed with Scleroderma on December 20, 2007, 5 days before Christmas and 10 days before my 28th birthday; to say that I didn't have "the holiday spirit" that particular season would be an understatement. I was initially in shock and scared about what my future entailed, if I would even have a future actually. However, in the same breath I was relieved to know that the pain, stiffness, skin color changes and fatigue that I've been experiencing nearly every day for 5 years finally had a name, it wasn't in my head what I had was real. I was no longer going from physician to physician being misdiagnosed with everything from depression to vitiligo.
Thank goodness for my then Rheumatologist, Dr. Elena Weinstein, she was a life saver literally and figuratively. As soon as the lab results came back after the holidays, she started me on a medication regimen that I will have to take everyday for the rest of my life. Her knowledge, caring and compassion along with her expertise on the disease is what saved me, as I was pretty far along into my disease. Through her history taking skills it was revealed that the onset of my disease actually was 1999 and the full spectrum of symptoms happened gradually which is often the case with this progressive disease. My skin, lungs, gastrointestinal tract and blood vessels are compromised by the disease. I now have a network of doctors from different specialties who all have a relationship with one another ranging from a pulmonologist, rheumatologist to a cardiologist and have to undergo routine CT Scans, MRI's, blood work, Chest X rays every 4 months.
Through my diagnosis of Scleroderma I now fully appreciate life; I'm aware of all the positive things that I'm blessed with. My advocacy work for the Scleroderma Foundation is very rewarding. More people in the medical and general community overall need to be educated on the severity of Scleroderma and what it entails so that more people's lives can be saved and hopefully one day a cure can be found.
- Patients & Newly Diagnosed
- Healthcare Professionals