Hello...I'm new to the group!

General
1

Hi all,

I'm new to this group, and have been a little nervous about starting my first discussion!

I'm 29 years old, from London, and I have VWD Type 2 which was diagnosed 3 years ago.

I've really struggled with the symptoms of my VWD; the nose, ear and eye bleeds are still a daily occurrence, I have had surgery to stop bleeding within my gastrointestinal tract, and although successful, the surgery itself cause more bleeding.

I have anemia and low blood pressure due to the constant blood loss, which causes regular fainting and seizures, I also suffer joint bleeds, which I've been told are not common with Type 2.

I've been unable to work or travel alone for almost 2 years now, which has been quite difficult as I'm a Corporate Lawyer and prior to my diagnosis, I have always been very independent.

I'm now beginning to come to terms with the condition and the symptoms, but am still a little sensitive about it.

I'm now able to administer Tranexamic acid myself, which has been very useful, but I still need to go in for DDAVP every 4-6 weeks.

Although it has been extremely difficult, I think the condition has actually made me stronger as a person, and it makes me hopeful to see others with similar experiences as it can be a very lonely road when living with VWD.

Thank you all for welcoming me into the group, I wish you all well and look forward to hearing from you.

Leana

2

Welcome Leana. :)

I agree that having VWD can be a lonely road, perhaps because no one out there seems to know much about it? My daughter was recently diagnosed with VWD and, until finding this site, she felt like she was the only person in the world with it. Now she reads through everyone else's posts and feels like finally somebody else 'gets' her.

I believe she is also a stronger person now. Hang in there and we look forward to your posts! X

3

Welcome, Leana, we are glad to have you here. I imagine you have quite a few stories to tell. I believe you will be quite helpful to other members here, too. :)

4

Thank you for joining the group, Leana,

I hope you are getting strong support from your medical providers. Many of us have found that they have to read up on their condition so they can get the doctors up to speed when they see them. I know I have seen six different Hematologists in the past six months and each one has a different perspective on treatment. Several of them were somewhat disappointing as they made errors in the tests they ordered and the responses they gave!

Living with vWD is such a good title for this group as each of us has to develop our own strategies for dealing with the bleeding issues and dealing with people who don't begin to understand what living with our condition is like.

My favorite pet peeve is that some of the local stores allow people to bring their dogs into the store even though the aisles can be crowded and the animals are obviously not comfortable. (I am not talking about service dogs for the disabled which are trained to be in crowds). Even though I always wear heavy leather boots and long shirts and pants, I am uncomfortable when I don't have control over sharp things like animal teeth and claws.

How do you handle surface bleeds when you are out and about? Do you have a small pressure bandage kit and epistaxis first aid?

Is "Stimate" available where you are? That is DDAVP in an inhaler form that I always have with me for minor bleeds although for GI bleeds it's the hospital and VWF/Factor VIII infusions.

I am glad that transexamic acid works for you.

John the elder

5

Welcome Leana,

I'm so glad you posted an introduction. I am ever hopeful that the info and support gathered here can make a huge difference in wellness for all.

It's good to have you with us!

SK

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Hi Leana, i’ve just been added to the group also. Welcome:-) I find your story very interesting. You’ve had a lot of trouble with your type 2 diagnosis. My daughter gas type 1 and has not experienced anything what you describe (yet). She is 14. I’m wondering are there others who have type 1 and have similar issues to Leana? Or is type 1 milder? I’m so sorry that you have been effected so negatively Leana. It must be very hard indeed.