Each year we participate in our local chapter's walk, and this year is no different! Join us in raising awareness by joining our team or donating to the walk on behalf of our team. This year, we are trying to get "Top Fundraiser" for Daphne!!
Daphne was diagnosed with VonWillebrand’s Disease Type 2B Severe and thrombocytopenia when she was just one year old. VonWillebrand’s Disease is a bleeding disorder that prevents people’s blood from clotting properly. There are three types of VWD, type 1, 2 and 3. Type 2 have 4 variants, 2A, 2B, 2N and 2M. Type 1 is where the blood does not have enough VonWillebrand Factor, Type 3 does not have any VonWillebrand Factor and Type 2 has VonWillebrand Factor, but it does not work properly.
Daphne has Type 2B. This is where her VonWillebrand factor adheres to platelets all the time, instead of only when needed. This in turn lowers her platelet count. On top of the VWD, Daphne also has Thrombocytopenia, which means low platelets. This lowers her platelet count even more.
Daphne always have excessive bruising and is more prone to mucosal bleeding, such as nose and mouth. When she was 3 years old, her nose bleeds, and bleeds due to injury were so severe and frequent that we decided to get a port placed. She now receives infusions of VonWillebrand factor three times a week to prevent bleeding.
Daphne is doing pretty well at the moment - there are always bumps and bruises, but we are managing her bleeding disorder pretty well. We have had a few issues over the past year - her port will bleed for hours after an infusion and she's had some more vibrant bruising with large hematomas. This has caused us to decrease the amount of time between infusions - every 2 days instead of every 3-4 days. We have just started this, so we will see how she does! We are also setting the goal to be 100% infusing peripherally (in her vein instead of the port) by summer and getting her port removed! Mom's ready for it, but Daphne is still struggling a little. We are just taking things day by day/week by week!
Thank you to everyone who has supported Daphne and our family over the past 9 years (wow, our 9th year anniversary of her diagnosis is coming up in April!)! We really appreciate your continued support! We wouldn't be doing as well as we are today without you all!
Thanks you!!
Samantha