The Voice of a Scleroderma Patient
Hello everyone! It has been a while since I have shared a blog post with you all, please forgive my absence, but I have a good excuse! On September 14, 2013, my husband and I welcomed our first child, a baby boy, Shane Patrick. We could not possibly be happier than we have been in the last 5 months since he has arrived. He is such a joy and blessing!
In the time since I last posted to this blog much has also been happening behind the scenes with our documentary film, Project Scleroderma: Beneath The Surface. Our team is working on final edits for our film festival entries of the documentary. The film will be entered into many different festivals throughout the U.S. and possibly abroad as well in 2014. Once the festival entries are complete we will then be able to make the film available for purchase. We thank you all for your patience and we promise you will eventually have the opportunity to view/purchase the film!
Aside from the film, my mission to raise awareness in other ways though Project Scleroderma continues as well. It is my on-going mission to help share the message of awareness for and with all Scleroderma patients as they continue to battle the daily obstacles of this frustrating disease. Just last week, there was one patient in particular whose voice rang clear and strong as a call to action, and which moved me to share her words with you. On February 28th, Rare Disease Day, Kelly Ellison shared with her Facebook followers, in part, the following:
“Scleroderma is a horrible complicated disease for which there is no known cause and there is no cure. There is still a need for global awareness as many succumb to the fight daily, mostly women. Imagine so much hardening and scarring around your lungs that you have to fight for every breath as you try to walk up a flight of stairs or even to the next room. Imagine trying to eat and enjoy your favorite meal, but you can’t because of the hardening in your digestive tract has caused your esophagus to close to the point where food gets stuck or there is no wave motion so food only goes down because of gravity and won’t stay down because the flap at the bottom doesn’t close which leads to regurgitation or constant vomiting. Imagine the skin being so tight on your hands that your fingers become claw like; you can’t extend them or make a fist which prevents you from holding a toothbrush, pumping gas, sliding your debit card in the ATM for cash, combing your or your child’s hair, opening a bottle of water, and the list goes on. Imagine the skin all over your body being so hard and tight that you can’t bend or stoop to pick up your keys because you dropped them in the middle of the post office, get in and out of the tub without assistance, put on your own socks, bra or underwear, drive, lift your hands above your head or behind your back, your face is so tight that you can’t open your mouth wide enough to bit a burger, banana or popsicle or even brush your teeth in the back. Imagine constant pain in ALL of your joints. Now that you have done this…welcome to my daily life and the lives of hundreds of thousands of women, men and children. Wow, right……….right!”
Now let me tell you, I have come to know Kelly well in the past year (as her story with Scleroderma is one that we highlighted in our film), and this is in no way her asking for our pity. Rather, she is asking us all to take a moment to try and understand just how complicated and disruptive this disease can be on any given day for Scleroderma patients as they attempt to go about a “normal” day. Kelly’s words make it clear as to why it is so important to help spread awareness and support organizations like the one she started herself, four years ago.
The Relief Foundation is a non-profit organization founded by Kelly Ellison out of a need to provide access to information, resources and assistance to significantly improve the quality of life for individuals living with Scleroderma. The Relief Foundation’s mission is to provide assistance with the practical, physical and emotional challenges faced by individuals living with Scleroderma through empowerment and education. These efforts include hosting informational workshops, group and one-on-one support meetings, fundraising events, scholarships for attendance at national conferences and forums for patients living with Scleroderma.
The work that Kelly is doing is powerful, and even more so because she is doing it all while fighting her own battle against this rare disease. In closing her Facebook post Kelly asks her friends and followers, “Please help spread awareness today and moving forward by telling someone about me, sending them to The Relief Foundation website at http://www.relief-foundation.org helping support a patient and their family by making a donation.”
I ask you all to take a moment to check out her website and if you can to also help support her organization and their mission. Thank you!