Debbie Baugher | VHF Constituent, Board Member and VHF Travel Scholarship Recipient
First, let me thank the Scholarship Committee for allowing me to attend the Symposium!! What a great time I had at the Hemophilia Federation of America (HFA) Symposium! This year’s theme was “Family Reunion” and after over two years of virtual meetings, it was so good to see familiar faces in person!
As always, these meetings are packed with information but also allow time to connect with old friends and meet new ones. There is also time to visit the Exhibit Hall and meet with representatives from manufacturers, specialty pharmacies and non-profit organizations. There was much information on emerging treatments and therapies.
The sessions are simultaneous with similar topics based on your situation. One that I attended was the Rap Session for Parents/Caregivers. While this was going on there were also Rap Sessions for Blood Brotherhood and Blood Sisterhood. The Facilitator began by asking if anyone had anything they found they needed help with. The first person to speak was a young single mom with a son in kindergarten. She knew about financial resources, but her challenge was that she was doing this journey alone…. not a lot of support from family or friends and finding a job that would allow her to leave when her son’s school called. Immediately, people jumped in with how to find resources, not just through her local chapter but through services that most communities offer. They talked about how important it is for each of us as caregivers to take care of ourselves, too. Even a few minutes of quiet time can give a boost on a hectic day. Next, a young couple from Florida spoke up. Their 4-month-old son had recently been diagnosed so they were new to the Hemophilia community and not aware of all the resources available. This was a good reminder to me there are always new families that may feel overwhelmed with the new diagnosis and need our support to navigate all the medical hurdles or just need to connect with other families that have already been through it.
I think the most moving and memorable portion of the meeting was the Celebration of Life. This is a time for friends and families to honor their loved ones who passed away due to Hemophilia related issues. Most prevalent were those deaths due to the “bad blood’ that resulted from blood donations that were pooled and then used to create a human factor product. In the 1980’s when HIV began to appear, the blood donations were not screened so this product was administered to thousands in the Hemophilia community. The result was over 10,000 people being infected with HIV and over 15,000 with Hepatitis C. It is estimated that over 10,000 people with Hemophilia died as a result of this medical catastrophe. For me, I have members of my extended family who suffered through this terrible time and lost two precious sons, so I attended in their honor. But through all the sadness and grief, today we have many safe, thoroughly tested treatment options. I see my grandson able to run and play and be a normal 8-year-old and remember that 20 years ago, this may not have been possible. Supporting VHF in its fundraising efforts helps to ensure education and services for our Hemophilia families and the continued research that truly allow us to hope that one day we’ll see a cure!