OhThis post was sponsored by Scleroderma as part of an Influencer Activation for Influence Central
I know this isn’t something I usually post about, but when there is a campaign that hits close to home like this one, from time to time you will see it here on the blog.
What is Scleroderma you may ask? Well let me educate you a little bit if I may. Scleroderma is a rare autoimmune disease that has no known cause or cure, affecting mainly women from ages 30-50. It affects the connective tissue which causes skin hardening (“sclero” meaning hard and “derma” meaning skin) along with symptoms ranging from joint pain, digestive issues, lung scarring and can be life threatening to many.
My son was diagnosed with a juvenile version of Scleroderma called Morphea when he was 8. We had noticed a discolored patch on his lower back which we had checked out by a local dermatologist. They examined the discoloration and took a biopsy to diagnose him with the disease. With the skin hardening of the disease the biopsy spot automatically turned into hard scar tissue.
With Scleroderma being so rare (affecting 1 in only 903 people), the dermatologists in my area have never dealt with a juvenile case so they sent us over to the University of Minnesota Children’s Hospital, where we met with a dermatologist there with more knowledge and experience. She informed us on all the symptoms and outcomes and set up a treatment plan. We went back every 6 months to gauge the growth of his discoloration to see if it was inactive or not. Luckily we are at the state where it has not grown and no more spots have appeared.
Here is a list in more detail about the disease itself:
We live day-to-day with a now active 11-year-old, who does every sport imaginable so he can defy his disease. He is at the age where he knows what he has and get’s nervous at any discoloration that he finds on his body because he himself has become educated on what he is living with and he knows what the potential outcomes are. Although we do not know what the future holds for my son, we are keeping ourselves optimistic with the education and resources that we currently have available.
June is Scleroderma Awareness Month. How can you help others like my son? Take the pledge and let ONE person know about this disease that is affecting thousands, yet no one talks about because it is virtually unknown. No money involved, just a little education. Take it a step further and participate in the Thunderclap promotion which raises awareness about World Scleroderma Day which is June 29th. Even if you aren’t personally affected, there are many family’s of people out there who are suffering, who are just waiting for more answers.
Let’s educate people on Scleroderma and help us get the funding and resources we need!