Hi,

• I would like to share my story anonoumisly, since I fear negative consequences by telling it.

I am a young woman and I was diagnosed when I got my period with mild vWD type I and a thrombocytopathy. My doctor at that time was amazing. My first treatment didn’t work out fine, so I got other options. I felt secure and received an amazing treatment, inclusive a 24h number to call, when there was an emergency.

• When I finished school,  I moved far away to another City to go to a University, so I was Forced to switch my doctor. It may be Importen to add, that my first hemophilia Doctor wasn’t in a Hospital but the Doctor I moved to works at a University Hospital.

At my first appointment the doctor claimed all the diagnostic that was made was wrong and had to be retaken. I already had taken many tests at my old doctor before but I still agreed. After the tests they didn’t say my diagnosis was wrong but they didn’t say it was right either. They just sent me the outcome of my blood Tests without any Personal Explanation. When I asked for explanation, they didn’t answer at All. They just said, with my old and still current diagnosis I received the wrong treatment. They just Varied my first treatmentand claimed Ii should work by itself. I Tried to explain my Problems with my first treatment and Trier to Argue why I Would like to Keep my Modified treatment, that helped me a lot better but they denied It. And their only explanation was, that they don’t like to give that Kind of treatment. (I Researched IT later and Found out, that my treatment wasn’t unusual at all)

A few Months later at night, i thought I had a muscle bleed. I wasn’t Sure but the only emergency contact they gave to me, was the emergency room. They told me, when I go to the ER, everybody will know waht to do. I went there and nobody knew what to do. Nobody there had ever heard about the treatment of vWD or thrombocytopathy and they hat no idea how to treat me correctly. I called my old Doctor from my hometown and that was the only only who was able to help me after All.

That was a very long Story. My whole Intention telling it, was to Show that even in a medical well developed country where it seems that everybody hast access to treatment, still happens scenarios like I experienced.