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If you don't mind me asking what year was it when you woke up & couldn't move half your body.... At age of 7-9 (1999-2001) I was part of a study of HHT at Toronto Sick Kids Hospital... I was asking about why they were doing the test they were doing and doctor told me about a young girl in her teen just woke up one day and couldn't move half her body. If you were the young girl he was talking about.....talk about small world!

Thank you ... where can my friend in Iowa go for help ? ... She suffers greatly, she's been at the Mayo Clinic many times, 2 brain surgery's and what i dont understand is they keep giving her Chemo and she just gets worse n they don't try anything new ... she's broken and needs help. ... she was diagnosed a few years ago ... her grown daughters both test positive for it also ... and have had success in their fight ... my friend was not diagnosed early and went untreated for a very long time.

I've been trying to understand the pathophysiology, thanks for posting this video. Just to be clear this pathophys explains telangiectasis but not AVMs? also the mutation of the receptors on the cell surface are responsible for HHT?

Hello from southern CA! Not sure if you are still monitoring but throwing it out there! I have an adopted child, no history from family except drug and prenatal alcohol exposure. He is 6.5 and has had really bad, long lasting nose bleeds sometimes lasting 30 minutes or more. We tested for VW and factors. He is factor 12 deficiency but all others are negative. He has had to have both sides of his nose cauterized twice in a year due to very large blood vessels. He has amicar for when it is bad. We can use that for up to 3 days. I see no telangiectasias but after watching some of your videos, that is not uncommon in a child as young as he is. The hematologist said that they might test him for HHT when he is older. My question, should we just do genetic testing now? Thanks so much! Patty Boles

I can relate 47 year old with HHT the problem area I have it in the lungs for the most part

Would live red blood from GI bleeding be and indicator of to what part in the GI could possibly be bleeding as in the opposite of black stool color if it’s red alive blood in the stool can that be an indicator that blood is in the lower part of the intestines ?

If an AVM is bleeding from the liver for example will the blood bleeding be transported to the intestines and processed and how will it appear in the stool black color stool or red alive blood 🩸

Can Corticosteroids therapy cause GI bleedings? or cause AVMs to bleed . What blood test should be considered to make sure blood can be coagulating to help avms stop bleeding

Can low platelets cause avms in the GI tract to bleed 🩸

What is the most common part in the GI tract that can get damaged the most in radiation therapy to the pelvic

Can pelvic radiation cause problems with avms to bleed in the small intestine

Donde puedo tener ayuda con esta enfermedad . Vivo en Houston . Gracias

Thank you so much for the awareness on HHT

I am one of this 4% people who have a genetic mutation leading to HHT without inheritance. My parents are in their 60s free of mutations and any symptom. I am currently 28 yo, but I was diagnosed with HHT only few years ago. I had already a right temporal lobe AVM, which caused a lot of problem at the age of 7, subsequently fixed via surgical procedure. During the years and other clinical problems another AVM in the lungs was found. Nobody associated my daily nose bleeding with these AVMs for suggesting this disease. It's not an easy life and sometimes I am afraid new AVMs will occur. Also planning a family results scaring. I will follow Your updates and conferences, thanks for uploading material and keep working for improving the life of people like me (even coming from an other part of the world, like Europe)

I’m am looking to getting help

I had a malformation rupture on my lip years ago, and just had the spot it left surgically removed yesterday. I get nosebleeds daily, was diagnosed, and both my mother and her father had it. I sleep with a humidifier so my nose doesn't dry out and bleed, and I take daily iron supplements. HHT isn't fun, but it is manageable.

My mom suffers from this terribly. It’s killed other family members & almost killed her many times…To see her suffer from this is truly heartbreaking…She’s seen at the University of Michigan in Ann Arbor.. I pray for all who suffer from this, & pray for the doctors who treat this.

First of all, I want to Thank you so much for this amazing presentation! Wow this is mind blowing to me how we know so little about how his despite I lost my mother 30 years ago and now my brother almost 2 years ago with now I believe it was HHT because, my other brother is now diagnosed. I was fortunate to talk with his doctor today who reached out to me to discuss possible treatment plan. So today is the first time I learned the term HHT and started looking to read about it and searched on RUclips and landed on your well detailed presentation! I am so grateful for you. I also have children who has nosebleeds sometimes but I don’t have any of the symptoms although I used to suffer from anaemia but no longer have that. It is indeed paramount. I will be starting some testing. I will be more than happy to be part of the research if needed. I am in Canada. Thank you!

My brain AVM ruptured during pregnancy. Lucky me.

I'm feeling so depressed thinking that my son has inherited some kind of AVM syndrome from me. Either HHT or CM-AVM. I had a brain AVM rupture while pregnant with him. I haven't had many nosebleeds and none since having him 10 years ago. I have a telangiectasia on my hand and no family history. I have bier spots and one small capillary stain on my arm. My son developed a telangiectasia on his lip this year and I've been paralyzed wirh fear. I don't think a general doctor would take this seriously and I truly can't accept this is happening. It's supposed to be rare to have no nosebleeds or family history. It's supposed to be more rare to have an AVM in the brain from either syndrome. I feel so cursed and broken..

Wow for the first time I finally understand HHT, incredible, thank you!

My husband had HHT and severe, life threatening, debilitating nosebleeds (three a day, anemia, transfusions, etc.) and some intestinal bleeding for years. After diagnosis and consultations at U of Penn and UNC, our hematologist in Virginia put him on Avastin infusions in 2016. In six weeks his nosebleeds completely stopped…zip, 0. Blood stats rose to about normal. He died in 2022 of totally unrelated illness. Avastin gave him his life back in his last few years. Our daughter and our grandson have been diagnosed with HHT also. The future does not look nearly as bleak for them.

39F. I have one apparent telangiectasia on each hand (tiny) and a fairly non-existent history of nosebleeds. Maybe one in my youth and two during pregnancy. None since pregnancy 10 years ago. No family history. Brain AVM bleed at 29 years old, corrected by surgery without complications. My son has what looks like a lip telangiectasia (age nine). No other symptoms. I was told by my neuro that genetic AVM is unlikely. I'm scared now. I worry that my son is a ticking time bomb and that a brain AVM is inevitable. I also worry about this condition called CM-AVM. I feel like such a defect. Nobody in my family has this and I feel so guilty passing it on to my son.

My father is 88, and he has chronic nose bleeds. He's been on Avastin in NY for the past 2-3 years and has greatly improved his quality of life (before Avastin he needed a blood transfusion almost biweekly, hemo dropping below 7). Now he has started bleeding deeper in his nostril in a location where he is not able to pack/control, requiring him to go to the ER. In his last hemorrhage, he was intubated for 4 days until the bleeding completely stopped and coagulated. Have you ever had patients who came in to have their noses packed routinely as a preventative measure? My father usually keeps his nose packed changing the packing every few days to avoid infection. but because this section of his nose is impossible for him to pack we want it to be treated regularly. Please if there are any other ideas. Also, we do not do cauterizations because years ago an ENT created a whole in his septum from the cauterization

Thank you for a very informative presentation on HHT and lung AVM’s

P r o m o S M

Amazing lecture and simplyfied

Thank you for this video. I had a Spetzler / Martin Grade 3 AVM with embolizations and resulting craniotomy with ischemic and hemorrhagic strokes. How would I see if I have passed HHT onto my child. I often worry about this. Thanks

I am a patien with this condition

My mom has it and I and one of my brother has it

I believe without herbs by now I will still be lamenting the worst of it is that I was gradually loosing my marriage before I discovered a way out with the help of Dr Oseghale Sunday Herbal Home his herbal medicine are outrageous and it's cures completely I was cured from Hpv and Hsv 2 after I finished the medication for 14days one thing I know is that Dr Oseghale Sunday is a man of his words

Good

Very informative presentation. Loved the Q&A section to clarify some topics. Learned a lot about HHT.

Good information. Very clear delivery. Hope offered. Where would be be without hope.

Thank you so helpful. I had Youngs procedure six years ago and thinking about getting it reversed. So this information is very important

Very informative and clear! Easy to understand. Great talk!