In March 2014 I attended my first HFA conference, and for the first time in my new journey as a hemophilia mother I didn’t feel alone and left truly inspired.Â Beyond encouragement, I also received education which helped me to accept my own diagnosis of hemophilia.
For example, I met Julie, who told me about her bleeding disorder and she urged me to get my von Willibrand level tested during my next HTC appointment. Despite my doctor’s suggestion that it was unnecessary as my factor VIII levels were low, my results came back with a “borderline below average” for Â von Willibrand Disease.Â In addition, I met other women bleeders who actually took factor for their bleeds or prophylaxis to avoid bleeding.Â This was never mentioned in my HTC (in fact, treatment of any kind was never discussed) and it led me into a curious journey of discovering my own diagnosis.Â Because of women encouraging me along the way and the initial conversations that happened at HFA, I pressed on to further investigate joint pain I have experienced in the past five years and confirmed that I, in fact, do have significant joint damage; one doctor even noted the damage looked “like a 60-year old woman, Samantha is now only 30.”Â Thankfully, today marks a breakthrough of my doctor’s approval of factor and home health nurses to help infuse. Even better news – I am going to get infusion training so that I can do this on my own one day!
I was told previously by my HTC that I couldn’t learn and wasn’t allowed to start trying to learn about infusion training until my son was several years older.Â But again I met many families and parents who encouraged me to start learning now.Â These people at Symposium encouraged me and ultimately empowered me to not only be a hemophilia mother but also to take ownership of my own bleeding disorder as well.
Meeting other hemophiliacs gave me the confidence and peace I needed that my son was going to be okay.Â I was inspired by seeing 30-year-old hemophiliacs who are healthy and active, and it gave me hope that my son won’t live a life full of limitations.Â In fact, I met a 30 year-old hemophiliac who told me his story of winning a wake-boarding championship and I was completely and utterly inspired that my son could also have a phenomenal life.Â In addition, I befriended other hemophilia mothers and gained the emotional support I needed, as well as insight to their years of wisdom. I met my home health care representative at Symposium who is also a hemo mom and now truly I can call her a friend.
The personal stories and advice from our bleeding disorder community is invaluable to me because we are able to freely talk about any and everything: from product to lifestyle choices, without the pressure from medical or industry professionals.Â At Symposium, there was a feeling of trust amongst all of the attendees so I was able to seek knowledge and support.
Although we are all bleeders, not one bleeder is the same.Â Thus, I was fascinated to meet other bleeders and hear how differently they live with their bleeding disorder. I learned through the community members themselves that you can truly live life with limitless possibilities instead of instead of with limitations and fear.
Seeing the history exhibit at the 2014 HFA Symposium, as a new member into this community, taught me about the trials, developments and hopes for the future of hemophilia.Â It was so amazing to gain insight of what our community has been through and understanding this history helps me to be sensitive to all of the hurt and loss in our past, yet taught me to be even more appreciative to the treatment options we have today.
Meeting other bleeders at the HFA Symposium gave me the confidence and knowledge I didn’t even realize I was lacking.Â Because of the power of community, I finally felt I could take a deep breath and relax knowing that no matter what battles or victories our family go through with hemophilia: we are not alone.
**To experience what Samantha felt after attending her first HFA Annual Symposium, register for the 2015 HFA Symposium HERE.
Samantha lives in Texas with her husband, Alex, and boys, Adoniah (3) and Christian (almost 1 year old).
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.