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Comment by tassiebek on March 26, 2012 at 5:35am

Certainly have and did for many years....

these days I know it has made me the person I am today, and I am greatful for that...Being a teenager is hell for anyone; add having a condition that makes you different, let alone a tendancy to suddenly bleed... you may as well have FREAK tatooed on your forhead in fluro .... I carry a towel in case my nose bleeds, certainly not a good look...But I survived and learnt a lot about people and they way they judge and treat you.

I am currently studying social work, and we keep discussing working with people who are stigmatised and I have some understanding of that due to my condition, as well as discrimination....

So I have a level of understanding that I hope will assist me with my future work and clients.

So even now it is hard, I understand that; but turn that to a strength and become the best you possibly be....

dont let it define you, instead define what you can achieve

Comment by Jenna on June 23, 2011 at 3:30am

Thanks to Wikipedia: In medicine, a disorder is a functional abnormality or disturbance. And thats what we have, so use the word disorder, not disease. It has slightly different connotations and might help your problem. 

 

I think one of the difficult things about our condition is that it isn't known about, even by a large section of the medical community. I remember getting an elbow joint bleed after getting blood taken, just because the nurse didn't appreciate being told how to take blood by a 16 year old. If she'd listened to me, a day off school and a lot of pain could have been avoided. I'm now really fussy about who takes my blood - if I don't like their attitude, I'll wait for someone else.

 

When you're dealing with other people, remember that you're the expert, and they're the layman, even if its a nurse or doctor you're dealing with. As for teenage boys - if you can actually find one that understands VWD in a mature fashion, you've hit gold! Now that I'm well past my teenage years, I actually find blokes are more understanding - some women don't seem to believe what I tell them about my symptoms, especially the periods.