Nearing the Finish
It is amazing to see the progress that has been made thus far in the “Project Scleroderma: Beneath The Surface” journey. As we are close to sharing our documentary film with the world, it feels as though a new and exciting beginning is on the horizon. Project Scleroderma’s mission all along has been to spread awareness of this disease as far as we possibly can, and with this film we now have a powerful visual tool which will greatly help us to achieve our ultimate goal of global awareness going forward.
Almost two years ago I set out to find a way to dramatically and effectively change the level of awareness of Scleroderma. As those who have followed this project from the beginning already know, I lost my mom to this terrible disease in a very quick period of time. My family and I were left confused as to what it was that so swiftly took our mom from us.
As I set out to learn more about the disease, I joined a support group online for patients as well as family members who have lost a Scleroderma patient. The interaction I had with the patients on this site was not only informative but incredibly inspiring as well. I learned more about the different types of Scleroderma that exist and the myriad of symptoms and obstacles that come along with each diagnosis. I learned how frustrating it could be to have a disease with so many side effects that are similar to other diseases or conditions, thus making it difficult to diagnose. In many cases patients are led through an obstacle course of doctors and misdiagnosis before they arrive at the conclusion of Scleroderma. And typically by this point damage has been done that is irreversible. If patients are able to receive the correct diagnosis and care early on, the doctors then have a better chance of stopping the disease from progressing.
This of course was all news to me as my mom was diagnosed in April and passed away by September of that same year. Although my mom did not endure a similar course, I can truly empathize with the frustration these patients have over how little is known about this disease. Not only does the majority of the general public not know about this disease, many doctors know little about this disease as well, and honestly if I were a patient that would be the scariest truth of all to me.
As I have journeyed through the process of making this documentary film, I have learned more and more of the daily struggles that each Scleroderma patient faces, and just how unique each patient’s diagnosis is. From the beginning, I was aware that my passion for this cause was inspired by my desire to heal the loss of my mom, but I also quickly learned that the deeper calling for me was to help these wonderful people I have met along the way to be heard and to help them find hope as they battle this disease.
One by one, each patient over the past two years has touched my heart in a different and special way. Their willingness to share with me and all that they have taught me has ignited in me a sincere and lasting dedication to this cause. As I go forward with Project Scleroderma, even beyond the making of this film, I am committed to continue to help raise awareness for Scleroderma in hopes that one day we will all see a cure for this terrible disease.
You may not know someone personally who has Scleroderma, but the truth is, this disease affects all genders and ethnicities and it could very easily one day affect someone you know or care about. As we begin the next phase of this project, sharing this film as far as it can reach, my greatest hope is that it will inspire people all over the world to recognize the struggle that these patients are facing and encourage them to help support the research that is desperately needed to find a cure.