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Hi! Welcome to our site. This site is designed for anyone looking for information about vonWillebrands Disease.
I was diagnosed with vonWillebrands when I was born. I feel very lucky that I was diagnosed early. That is half the battle. There are several types of vwd, I have Type-IIA. I also have a gene mutation. Hey- lucky me! That mutation somehow makes my vonWillebrands a little different. I was the youngest kid to pass a self infusion course at Penn State Milton Hershey Medical Center.
Yes- ALWAYS go to a HTC (Hemophilia Treatment Center) to get your care. I treat with Humate-P, take amicar tablets and have become a pro at packing my nose. Generally- I have some sort of nose issue daily. If you use vaseline around your nose and saline it keeps the bleeding to a minimum. I have had a spontaneous tonsil hemorrhage, brain stem contusion, many nose bleeds, tongue bleeds, tons of bruises and even a femur bleed. They say vwd patients don't have joint bleeds- guess what - I did.
I have always had the most amazing doctors and nurses. The #1 was Dr. Ungar at Penn State. I'm at Children's in Philadelphia now. I have attended Double-H Hole In The Woods Camp. This is an awesome camp for kid's with chronic illness. You can find out more on the site and through your local chapter .I started getting really involved in community service to say thank you to my great docs! My sister and I started Community Service Birthday Parties. Instead of receiving gifts for our birthday, we partner with a children's charity and raise money for that charity. We have raised over $30,000 so far! Not bad for two kids !
Some of the recipients of the parties are:
The National Hemophilia Foundation
Project Red Flag
Operation Christmas Child
The Todd M. Beamer Foundation
Double H-Hole In The Woods Camp
The Penn State Milton-
Hershey Medical Center
Children's Hospital
Alcove Center for Grieving Children
I encourage anyone to get motivated and help your community. I was recently selected as the
Nestle Very Best In Youth 2005
This is an amazing program that Nestle and Reading Is Fundamental sponsor. I will be going to Los Angeles in July to receive my award. The best part is that Nestle gives the winners $1000.00 for their charity. My designation is the National Hemophilia Foundation. I would like it to go towards a college scholarship for a young man with a bleeding disorder. I encourage anyone to browse through the site, check out the links, email me and get involved in YOUR care!
Be your own advocate, be your own voice in the bleeding disorders community. Get involved in your local chapters and through the National Hemophilia Foundation. Get the word out
IT'S TIME FOR A CURE!
Check out my band link:
Official Website of Patrick Droney
vonWilleWhat?
That's what we hear all the time when we mention this disease! |
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Welcome to our web page! My name is Josephine . I am 17 years old. I like to dance, read, write, play sports, and hang out with my friends.
I also have Type-IIA vonWillebrands Disease. I was one of the lucky ones I was diagnosed early and I receive proper care. I get all of my treatment at a Hemophilia Treatment Center (HTC). I go to the HTC at Children's Hospital of Philadelphia. I was IV certified when I was 10! It is a good idea to know how to self infuse. When I do infuse I use Humate-P. I also take amicar tablets, and prescription nefrix (iron). Some of the red flags with vonWillebrands are frequent nose bleeds, heavy periods, easy bruising, bleeding heavily during injury, child birth or dental surgery.
If you have any of these symptoms take time to ask your doctor to get you screened for a bleeding disorder. I encourage anyone to get involved in your care! Get involved in the bleeding disorder community in your local and even national level.
I became involved in NHF after attending an On the Road in Philadelphia, Pennsylvania. I attended the session after reading HemAware. I read the story of Dr. James and Dr. Elbirt, two women with vonWillebrands Disease. They were very active in the National Hemophilia Foundation. They inspired me to get involved! I hope to inspire you!
I have spoken at a Congressional Tea briefing and I have learned so much about how things work! I recently attended the 56th annual National Hemophilia Meeting in Dallas, Texas. The meeting was great! It was full of information and nice to see people I knew . I also met some new people as well.
In 2003, I was selected as
Nestle Very Best In Youth 2003
See picture below:
This is a great program sponsored by Nestle and Reading Is Fundamental. I went to Hollywood to receive my award. We had an awesome experience. It started by getting picked up in a limo and kept getting better and more exciting. The best part was a $1000.00 donation to the charity of my choice. I chose to donate the money to Project Red Flag.
The money along with money from one of my
Community Service Birthday Parties
helped to fund one of the first scholarships through Project Red Flag! This was the best part of my award!
Please check out my brother Patrick's web page. He will fill you in on our Community Service Birthday Parties. It is a great opportunity to raise awareness and to help a great cause!
Also, please check out the Double H- Hole In the Woods Camp. I have attended this camp several times. It is a great experience for any kid! Remember to be part of the solution and get involved!
Please wear an ID bracelet! They save lives! |
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