Anyone have experience with HHT or Osler-Weber Rendu?

Welcome @drewb and @dpmoot.
@dpmoot, I found this information about pulsed dye laser treatment from the website that @kchugg11 recommended.

- Pulsed Dye Laser Treatment https://curehht.org/resource/pulsed-dye-laser-treatment/

Did you decide to do the pulsed dye laser treatment on your lip?

@drewb, what is being done for the bleeding in your small intestines?

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

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?

Hello, I’m 62 and have HHT. Multiple family members have had it, and so we know a lot about it, (sometimes more than the doctors.) I have nosebleeds, telangectalias on my tongue, and a plethora of AVMs in my liver. Ugh… Has anyone heard positive things about Avastin?

Welcome to Connect, @jacquilogan. Talk about genetics… Really interesting to see how hereditary hemorrhagic telangiectasia has been passed along to members of your family. You’re all very familiar with HHT, so I won’t post links to informational sites of the blood condition. You’ve most likely read them all.

However, according to Curehht.org, Avastin (Bevacizumab) was approved for the treatment of HHT with postive results. I’ve posted the link to that article and another from Ashclinicalnews.org below:
https://curehht.org/wp-content/uploads/2020/07/POLICY-STATEMENT-Bevacizumab-Use-in-HHT1.pdf
~~~~~
https://www.ashclinicalnews.org/on-location/other-meetings/systemic-bevacizumab-improves-anemia-reduces-bleeding-hereditary-hemorrhagic-telangiectasia/
We have quite a few members in the forum who have used bevacizumab as a treatment for their particular forms of cancer. While we’re waiting for someone with HHT to join the discussion and relate their experience with Avastin, what is your hesitation in taking this medication? Was this suggested by your hematologist? Has anyone in your family tried this?

Have not been tested but apparently am a carrier and have passed it on to all my children. The only symptoms I have had are nosebleeds when I was younger and the red dots on the palms of my hands, inner lips. My eldest (59) was just recently diagnosed with HHT, second (57) has had brain surgery twice; first was emergency brain bleed and second was preventative. Third (54) brain surgery to remove an avm, fourth (51) avm removed from lung. My grandson, 15, surgery next month to remove avm from brain. My Mother’s two sisters’ families have also been diagnosed with HHT and being treated for avms.

Welcome to Connect, @lizaf Thank you for sharing your family story of members with HHT. This is incredible to have your four sons develop serious complications, requiring surgery and now a grandson. How frightening and stressful for all of you.

Were the family members who were tested all found to have the genetic mutation for HHT? What’s the treatment being offered to avoid more avms? And I just have to ask…now that you realize you may be a carrier, will you also get tested?

I will get tested eventually perhaps, but at my age, no real concern. Concern is with younger generations now that so much more is known. I had heard of HHT way back when two of my cousins back in the 70s had to travel from California to Utah for testing and treatment but so little was known about the genetic disorder so just somewhat forgot about it but in current times, so many of my Mother’s line have developed symptoms. So far with my children all surgeries are in preventive mode of a ruptured avm as happened to my 57 yr old son. He was taken to hospital for a massive migraine headache and ended up in hospital for 21 days with a brain bleed and a drainage tube hanging out of his head. A massive wake-up call for testing of other members. His second surgery was preventive, removing a bulging avm before another rupture. This is all new but the amazing thing about all of this is that the a couple of Grands that we were positive to have HHT, constant massive nose bleeds, are not carriers! Go figure.

And, no, not all tested have the mutation. My Grandson having surgery is only one of 4 to carry the mutation but we understand that if I am a carrier, then I can pass it on to my children. If I don’t have the mutation, then my children and their future children will be free of the genetic mutation. Our understanding to-date. May change tomorrow???

I also have HHT and no one seems to know anything about it here, just feel so alone in this battle, I would love to connect with anyone else living with this disorder, I don't have hardly any information about anything...I am 66 and diagnosed 2 years ago. I have had an AVM and had that repaired last year...please add me to any discussions regarding HHT

I have HHT. How did they repair your AVM? I have multiple bleeding AVM'S. I am also Ida and have iron infusions every 2-3 months.