Hi There!
Thank you for visiting my personal fundraising page to support the Annual Stepping Out to Cure Scleroderma event!
In April 2017, 3 years after I had experienced my first symptom and just a week shy of my 30th birthday, I was diagnosed with limited systemic sclerosis also known as scleroderma.
Scleroderma is a rare, chronic autoimmune disease that causes overproduction of a connective tissue protein called collagen. In a normal body, collagen is found in the bones, tendons and ligaments, playing a very vital role in the structure of our bodies. However, an overbundance of this protein, can cause scarring and hardening of various organ systems (skin, heart, lungs, kidneys, digestive tract, blood vessels) leading to organ dysfunction or failure and sometimes death. There are some treatments available to aid with symptoms, but there is currently no cure.
At the time of my diagnosis, scleroderma had caused moderate, irreversible scarring to both of my lungs. This scarring has also increased pressure in the right side of my heart known as (borderline) pulmonary hypertension. The degree of lung damage I have sustained will require the use of supplemental oxygen, observation through specialist visits and tests, and an immunosuppressant to aid in slowing the progression of my disease for the rest of my life.
While my lungs have been impacted the most by this disease, I also experience other symptoms that impact my life on a regular, often daily, basis such as: Raynaud's phenomenon, GERD, fingertip ulcers, muscle and joint pain, difficulty swallowing, skin tightening and fatigue.
Through my journey to diagnosis, I have found that awareness is not only lacking in the general population but even amongst the medical professional community - often leading to delayed or misdiagnosis. Research, awareness and early detection is vital to diagnosing, treating, and finding a cure for this devastating disease.
I have had the fortunate opportunity to meet with other amazing scleroderma patients and experience the incredible support that the Scleroderma Foundation provides to both patients and their loved ones, none of which is possible without donations from our generous donors, like you!
Please walk with me this year, or donate to help my team reach our fundraising goal of $2,000! Together we can make scleroderma a recognized name and "sclero-what?!" a phrase of the past.
Thank you for your support!
Jess
