Advocacy, Inspiration and Old Guys
After my much needed morning boost from Patrick’s presentation the momentum continued. I met with two really amazing women that live with bleeding disorders and advocate for better knowledge and care. A lot of focus in our community is on hemophilia and like many healthcare providers in and outside our field, it’s often assumed that women can’t have hemophilia or bleeding disorders. This assumption has to change and Tammy Davenport is someone that is advocating for that change. Tammy has two children, a boy and girl. Her son lives with hemophilia and so does Tammy. She was diagnosed at age five with hemophilia but was denied care and treatment because “women can’t have bleeding disorders”. She has suffered through untreated bleeds and chronic pain due to this mentality but she is making a change. She founded the Women’s Bleeding Disorder Counsel (WBDC) to advocate for change, education and how we diagnose hemophilia in women. I encourage everyone to check it out!
Where we connect even more is around being active with our hemophilia. Tammy found her love through yoga and is a certified instructor. I have found a love for yoga as well though I’m nowhere near instructor level! I still can’t even touch my toes but the focus on stretching, muscle control and breathing is amazing!
I also met a long time Facebook friend and fellow outdoor enthusiast Jenna Lovell at the WBDC booth. What’s even cooler is that she is from Tasmania!!! Yes she has seen a Tasmanian Devil and yes I discussed visiting there so I can see one! Jenna want’s to start hiking and climbing so I had a great time sharing my experiences with her. What struck me while we chatted was the similarities her stories have with some many other women. Late diagnoses, suffering from bleeds and having to battle for treatment. It frustrates me, and I’m sure them even more, that we don’t treat based on symptoms. If someone bleeds we should be treating that not some preconceived notion that women can’t having bleeding disorders. Like Tammy, Jenna is a huge advocate for this change and writes about her experiences on the blog, My Missing Factor. I look forward to women like this making it easier for future women bleeders to have it better. I know it will happen!
The last session of the day focused on aging in hemophilia. I wouldn’t consider myself old except for my tendency to go to bed before 10pm every night but I wanted to learn about the issues I may face in the future. There were some interesting speakers but the talk by Lorraine Flaherty was pretty interesting. Apparently people with hemophilia have a higher tendency to suffer from falls than people without hemophilia. It makes sense when you think about it. We suffer from bleeds that can weaken and destabilize joints. That weakness could lead to falls. This just solidified my stance on staying active and protecting our joints with hemophilia. Living with a chronic health condition already presents challenges so we need to try and minimize confounding factors.
Overall, it was another amazing day. I do have to say I’m getting tired and excited to go home and see my wife and dogs but it will be bittersweet. I will miss my hemophilia family but it’s comforting to know that they will always be there.
