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Anyone have experience with HHT or Osler-Weber Rendu?

Blood Cancers & Disorders | Last Active: Jul 31 4:41pm | Replies (23)
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@dulce355

I have delta granular storage deficiency (DGSD) which I think is the same as HHT. I have nose bleeds and hemorraging after surgery. I don't know who in my family has this issue. My sister and I both have Von Willebrands disease but she does not have DGSD. I sometimes think I have issues with my small intestines but also have Ehlers Danlos syndrome, which does not help..

Dulce

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Replies to "I have delta granular storage deficiency (DGSD) which I think is the same as HHT. I..."
Lori, Volunteer Mentor | @loribmt | Dec 9, 2023

Welcome to Connect, @dulce355 Both you and your sister have von Willebrands Disease which is a lifelong, bleeding disorder in which your blood doesn't clot properly. This is generally an inherited blood condition. Considering you both have this, it’s likely been passed down from mom or dad, along with the Ehlers Danlos Syndrome. Do you remember either of them having bleeding issues and/or overly flexible joints and stretchy, fragile skin?
Were these recent discoveries or have you always prone to nose bleeds and bruising over the years? What are the precautions you need to take to stay healthy?

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