As Kim drives us home from the FCS Foundation Patient & Caregiver Summit, I find myself processing the information, love and support that was shared not only by the attendees but also by the guest speakers and of course our event sponsors.
As Kim drives us home from the FCS Foundation Patient & Caregiver Summit, I find myself processing the information, love and support that was shared not only by the attendees but also by the guest speakers and of course our event sponsors.
I know I have asked myself why there aren’t more professionals with those attributes and the ability to treat patients with FCS where I live, but I then remember that I am rare, we are rare, and someone has to be the reason a doctor takes the initiative to investigate FCS. I am blessed to have an amazing primary care physician who took that initiative because of me. So how can other medical professionals be introduced to FCS? They are not my doctors so they may not have a need for the knowledge…but how would they know if they don’t know the signs to watch for? The best I can come up with is each of us should make every effort to be open about your life with FCS including the signs and symptoms and encourage each of your friends to share your rare condition and its impact with their doctors. We need to be more diligent in our ability to point them in the direction to informational websites. I mean let’s face it, we are scattered across this country and not one of us as an individual has the ability to reach that distance, but together we can span the distance with a voice loud and clear that will resonate with a hope that the future generations of FCS patients will not struggle with a diagnosis and effective care.
As I shared at the Summit, FCS doesn’t own me, because I own my FCS.
Thank you to all who attended and participated in every capacity to put this event together. The love and support has once again recharged my desire continue to stand on the mountain tops and advocate for each person affected by FCS.
No responses yet