For many, a world without bleeding disorders is simply a dream. Thousands of kids and adults affected face internal bleeding, costly treatments and lifelong infusions.
Recently, we've learned that our so-called 'prophy generation' (patients raised with safe, regular access to clotting factor to prevent joint damage) are suffering from the devastating psycho-social effects of having an invisible disorder that can have them skateboarding one day and wheelchair/crutches bound the next. I have witnessed young enthusiasm turn to rage and depression when a bleeding disorder rears its ugly head, for instance, before one is due at work or before a calendered commitment where the choices become; be a person of one's word and keep one's commitment and suffer devastating joint damage and endure hours of swelling and pain or honor the disease and stay home to treat, rest and recover but let down employers and friends that will never understand the damage that is going on inside one's joints that can never be undone. It becomes a double edged sword that has no relief. We've also learned that women and girls are finally getting to see treaters willing to acknowledge their symptoms as those of a bleeding disorder but whom have no access to the same treatment their community brothers take for granted. These emerging problems are why I walk. I will spend the next year bringing about change for these two concerns via my advocacy and fundraising.
Every dollar stays within our community and supports critical initiatives such as funding research to find better treatments, educating medical providers on the latest innovations and care, ensuring families have access to quality healthcare and providing access to the best educational resources available.
Will you help me reach my fundraising goal? Please make a donation today.
Thank you in advance for your support and united, we will make a difference.
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. "Coming together is a beginning. Keeping together is progress. Working together is success."