I participated in an Influencer Activation on behalf of Influence Central for Scleroderma Awareness. I received a promotional item to thank me for my participation.
Not often does a campaign to support a cause come this close to our family. Many of you probably have not even heard of Scleroderma but this is a disease that affects one of our family members: my mother in law. Unfortunately, there are no known causes and even more devastating, no cures. It’s estimated that 85% of scleroderma patients will live longer than five years after their diagnosis, and my mother-in-law has done just that She was diagnosed 24 years ago. Keep reading to read a paragraph I asked her to write to be included in this post. So why am I writing this article? June is Scleroderma Awareness month and I want your support. It really only takes a minute of your time, a click of your mouse, and no money. Heck, by reading this article today you may learn about a new disease that affects mostly woman.
- Since there is no known cure or cause research is vital, but because so few people are aware of the disease our researchers don’t always get the resources they need. This post will hopefully increase awareness about this disease.
- More doctors also need to know about it so people can get diagnosed early. Scleroderma affects thousands of people and few know much about it. Take the pledge to tell one person about the autoimmune disease that has no known cause or cure.
- Just because Scleroderma is so rare does not mean it does not need more attention. Scleroderma affects only 1 in 906 people. It hits women the hardest with 80% of patients being female. Be sure to read the info graphic for more information.
My mother in law is truly a brave woman. I can only imagine the pain she is in daily, but she never complains about it. She is just happy to be living and takes one day at a time. She is currently the oldest patient her doctor has seen and truly an inspiration for other Scleroderma patients.
My mother in law had to dictate this over the phone as she had just had surgery on her hand to take away some of the effects of this devastating disease. Her mobility is getting worse and the use of her hands has become a huge challenge. She lives alone after losing her husband to cancer 10 years ago.
24 years ago I was “hit” by Scleroderma. The fact of the matter is finding the right diagnosis and living each day as you would with any other chronic illness. I choose to be as pleasant as possible, I keep all doctor appointments, and I live the life I was granted. I did get a second opinion at the Mayo Clinic but was blessed with a Rheumatologist 5 minutes from my home. Acceptance comes slowly, denial gets thrown in, and life seems to get more limited as the disease increases. I have found out after meeting many Scleroderma patients that no two patients are the same. My Scleroderma is systemic but after 24 years I would like to share with you to find a blessing in each new day.
Mary Lou Long, Age 72, Buffalo, New York