The Bleeding Edge is a national nonprofit program with a mission dedicated to advancing the lives of adults living with the extreme challenges of bleeding disorders. We create better lives through educating and empowering men with bleeding disorders to overcome the limitations placed on us by our conditions and a progressively risk-averse society.
Our success is defined not by the work we do or the programs we put on, but by the lives we change and the barriers we eliminate.
“The two most important days in life are the day you were born
and the day you discover the reason why.” ~Mark Twain
Our Why
While a new generation of bleeders are becoming teens and adults the cohort of bleeders who survived the tainted blood era of the 1970s and 1980s is dwindling. Thousands of our fellow bleeders faded and died from HIV and HCV that came from tainted blood. What is not well understood is that even when the blood supply and products derived from blood were cleaned up, we continued to die from these diseases for decades.
In the last few years, we have slowed the mortality of those affected and even effectively eradicated one (HCV) of the two diseases and gotten a handle on managing the other (HIV). However, the survivor’s guilt, isolation, and loneliness continue to this day for adults and seniors living with bleeding disorders.
Educational programming and support in the bleeding disorders community most often focuses on younger bleeders and the parents who care for them. Programs for Teens, Tweens, and young adults are well-supported and frequently provided.
There is minimal support directly for adult bleeders and often this group is simply added to the programming cited above. This is a problem. Older bleeders do not need or respond effectively to remedial lectures on the benefits of prophy, the necessity for a “proper” infusion environment, or cute sayings better suited to kids and teens meant to remind us to keep us active and engaged.” Older bleeders also do not respond positively to new limitations placed by risk-averse caretakers.
“It’s so important to recognize, remember, and serve men like myself who survived the eras of no treatment and bad blood, and those men are now looking forward to aging without these issues.” ~ senior bleeder
The Bleeding Edge is about removing barriers, not installing new ones.
What is needed but is often missing is programming and connectivity support for senior bleeders. These adults are veteran survivors, having grown up with not only the constant threat of a tainted blood supply but also the historically inadequate treatment available prior to the introduction of factor concentrates. These adults live with the ensuing hemophilic arthropathy and joint disease, and all the other comorbidities of aging with hemophilia.
In addition, there are growing mental health concerns. Aging bleeders are struggling to manage through the continued isolation of the ongoing global pandemic. Too many of this community have succumbed to these hardships and engaged in destructive tendencies such as addiction. Then there are those, like Barry Harde and so many others, who have even taken their own lives.
Even now when the pandemic is curtailing programs, it has become more common to combine adults with programming for younger bleeders and their caretakers.
Silence is not an option. These adults need support and as the pandemic eases, these adults need to reconnect, re-energize, and refocus.
“We are so afraid of what can go wrong, that we forget
to hope for what can go right.” ~ senior bleeder
The Solution
Take just about any adventure activity and think of a way to make it safe for senior bleeders. For example, jumping out of an airplane sounds crazy for anyone with a bleeding disorder, let alone a senior bleeder with advance hemophilic arthropathy. But indoor skydiving is a great substitute, and very safe for just about anyone with the right precautions.
“The thing to be cherished and remembered isn’t the activity,
but the fact that I overcame a limitation in my mind…
and I can do it again” ~senior bleeder
These out-of-the-comfort-zone experiences, surrounded by others who are experiencing the same experiences and have lived a similar life as adult bleeders, creates a camaraderie and safe zone for survivors who have learned not to talk about the pain and limitations that have taken over their lives.
However, it has been demonstrated repeatedly that a wealth of experience just begs for stories to be told. And it is amazing to watch closed off, shell shocked survivors who have learned not to talk about physical and emotional pain, open up and describe in very personal detail what they are going through, because they know that others in the room have shared that experience.