Anyone have experience with HHT or Osler-Weber Rendu?

Hi I'm Samantha
I'm 42 this year and my mom would be in her 70s if she was alive but she got it from her dad which would be in his 80/90s if he was her as well I've been scared away from all the findings this has and just starting too really face reality and that's only because I have too prepare my 2 children when I die. So sorry all this has happened too you. I pray my babies don't have too go through all this but only God knows. But It's my job too do my part some how. I will be praying for you, and your family. I'm so scared now, my mom was so scared that she refused too go too any Dr's. So I had no idea what I was up agaist but God has the final say. Just pray for me and my two children please thank you.

Hello…I’m 66 years old and have been living with HHT for several years. The mutated gene that I have is ENG.
I’ve had an AVM in my right lung which was embolized in Toronto at St Michael’s hospital.
I have one son that has HHT as well.
My case is a little different than the others that I have read on this blog.
My father was deceased when I was diagnosed in my early 50s. My mother was never tested before she died, but she never had any nosebleeds at all.
I have six siblings and not one of them have nosebleeds. One sister has been tested and is negative. The experts feel I am a unique case because I don’t have any family members with HHT.
I also attend a HHT clinic in Toronto, Ontario for checkups and as well I see an ENT doctor in London, Ontario.
My ENT doctor in London has been wonderful in helping me deal with these spontaneous nosebleeds.
I’ve had a few surgeries with him where he cauterizes my nose and has injected Avastin under the lining of the nose. It has been a very effective procedure for me, but now that I am older it’s not as effective.
I have recently had the “young” procedure done to my right nostril, which has been very helpful. My left nostril is still open and does still bleed.
(I also take transexamic acid 1000mg 3X daily to help with the nosebleeds.)
I decided to do the “young”procedure to my right nostril because I felt my quality of life had deteriorated greatly. I wasn’t leaving the house for fear of a nosebleed.
It was difficult to plan anything because I would meet friends/family for coffee/dinner and I would have a nosebleed and have to leave abruptly.
My husband wants to do things like travel and I’m afraid to do so. (Mostly, fearing being on a plane and having a nosebleed.)
Things like enjoying a cup of coffee in the morning or brushing my teeth could trigger my nosebleeds.
Also, going to a dentist is challenging because of the nosebleeds and as well I have Telangectasia on my lips that bleed easily.
Last year I was diagnosed with breast cancer and had surgery; went through chemo and radiation. My nosebleeds were horrible during chemo.
(BTW, I have to be an advocate for myself and educate others because many people (and health professionals) are unfamiliar with this disorder.)
I am hoping and praying 🙏 that now that I’ve had the “young”procedure I can get back to doing the things I enjoy.
(Nothing is perfect and never will be but I am taking it one day at a time.)
My son’s nosebleeds are manageable at this time.
I pray that the experts will have more effective treatments available to him in the years to come.
I don’t have anyone to talk to about HHT (other than my son) so thank you for allowing me to share my story through this blog.

How do you get these illnesses AVM… I would like to know more about them

Look up Hereditary Hemorrhagic Telangectasia (HHT) or also known by Osler Weber Rendu Syndrome.
There is lots of information on the internet. This is a genetic disorder that you inherit from one of your parents.
An AVM stands for arteriovenous malformations which means there are abnormal blood vessels connecting between the arteries and veins.
I hope this helps.

Hi,
My name is Brenda currently 64 yrs old and have been dealing with severe symptomatic nosebleeds since a toddler. I don't know when medical professionals started looking at as a disease called weber or HHT. I was diagnosed about 6yrs ago, but have family history. My dad, my uncle and my grandmother.
My grandmother was 1 of 12 children, and i know there are others generational that struggle with this.
My older brother was actually diagnosed before me in his late 60's. He had not been predisposed to nosebleeds like me, my dad, or my uncle.
The disease is progressing. My grandmother, uncle and myself have developed AVMS in the stomach and intestine. I suspect my father too. Anemia also is problematic. Iron supplements and now infusions don't seem to help much. My ancestors never felt that the medical proefessions helped much. I am hoping this has changed and some reasonable form of management will be available.
Symptoms have worsened as i enter these golden years.
I have plans to go to a regional HHT specialty clinic in Portland, Oregon.
Hoping for some relief from the debilitating, exhausting progression.