English 
Carrie Johnson
After many years of muscular-skeletal injuries and digestive system problems myself and my two daughters were diagnosed with Ehlers Danlos Syndrome just over a year ago. My youngest daughter gets scarily bloodshot eyes every time she’s sick with anything at all, my eldest daughter frequently has blood noses. One of her blood noses was so […]
Dee Good
Im sharing my journey with vwd on behalf of my 14 year old daughter. I first heard about Von Willebrands disease just a few months ago. A little background on our journey so far, my daughter started her periods at 12 years of ago, everything was ok until around 12 months ago when she started […]
Dr.Prajkta Kulkarni
Hello friends,I am Dr.Prajkta Kulkarni from Pune,India.I am Anatomy professor.I have 2 sons.Elder one is 10 yrs. old non-haemophilic and younger one Areen is 2 yrs.old with severe factor VIII deficient.He was diagnosed on the 6th day after birth in NICU after per rectal bleed.Since then our lives have changed a lot.He has recurrent intramascular […]
Dr. Shahla T. Sohail
My parents were first cousins, and got married according to the cultural norms in Pakistan. At that time, there was absolutely no history of inheritance of bleeding-disorders in the family. I was their first born. Parents love and care was unconditional. Unaware of my destiny, I began to grow. My mother noted easy bruising in […]
Shauna Adams
I was diagnosed with type 3 von Willebrands disease as a baby. My parents were uncertain on what was wrong for some time – I was covered in bruises from the time I started learning to walk. Doctors were very judgemental and even accused my parents of physical abuse. It wasn’t until I bit my […]
Debbie M
My name is Debra Margolin and I was born with the type III Von Willebrand’s disease I have 0% and it’s not more than 3% Factor 8 I am currently 54 years old so that when I was born the only thing that was available to me at the time was plasma. In the 70s […]
Jaimen Johnstone
I have a rare connective tissue disorder also known as Ehlers Danlos Syndrome As a child I was very flexible and bendy, I was also always in pain mainly my knees and ankles As I got older, the pain only spread to other joints, doctors and specialists didn’t know why… I am now 23 and […]
Chloe Christos
[Born with Von Willebrand Disease, low Factor 8, and Ehlers Danlos Syndrome] I was the first of my family to receive a diagnosis of vWD at 19 years old following 5 years of continually menstruating and requiring weekly iron infusions whilst still anaemic. I suffer from mucosal bleeding, muscle bleeds and soft tissue joint bleeds. […]
Kathy Chesser
Hello fellow bleeding disorder friends. I was diagnosed with severe Von Willebrand’s Disease in 1990 & Platet Storage Pool Deficiency in 1997. I identified as a Hemophilia treatment clinic patient for 2 decades -receiving Stimate, Lysteda, Humate-P, Iron Dextran infusions ad nauseum-until a VERY sharp HTC nurse identified criteria consistent with “something more” & referred […]
Shirley Miguel
Eu me chamo Shirley, sou de São Paulo/Brazil. Sou mãe de 4 filhos, o meu filho mais novo o Felipe, foi diagnosticado aos 11 meses com hemofilia A grave >1% . Descobrimos a Hemofilia quando o Felipe sofreu uma queda e bateu a cabeça, ele teve um grande sangramento e causou uma meningite. Foi um […]