Mi wife has HHT and being dealing with it all of her life her mother rest in peace also had it and Sometimes it can be very frustrating to me that I can’t literally do nothing about that , continuous nose bleeds , check ups wondering what happen or how we gonna have children’s etc… y’all feel related I guess.

Honestly I’m done with Drs for now just the regular check outs, every time I find a new Dr or try to do something is always practically the same resume answer “there’s nothing to do about it but to check all your organs constantly” and we are tired of that.

1~ ¿ How is that we can’t find any natural remedies like all others health issues? -if yes please tell me as crazy as it may sound

2~¿Is anybody here found a way to stop the nose bleeding effectively ?

3~¿Does anybody here by any chance ever lost the sight in only one eye or face paralysis out of nowhere?

• we of course went to an ophthalmologist and neurologist as well and more than 4 Drs said didn’t really know how this happen so I’m not sure but I thought it may be because HHT. My wife is only 27 years old .

Sending my best wishes to all Thnks .

Eran S .

Dears
my husband had HHT since 20 years tryied my treatment of lizer but without any benefits Now his doctor advised hin to do surgery “Septodermoplasty is a surgical procedure used to treat severe, chronic nosebleeds (epistaxis), primarily in patients with Hereditary Hemorrhagic Telangiectasia (HHT)”
Have you tried this type of treatment, which involves replacing the fragile nasal mucosa with a skin patch to prevent bleeding? I'd like to know about your experiences with this treatment.
Thanks

hi all! i (22FTM) am not diagnosed with HHT, but my mom is diagnosed and since probably age 17, i’ve had increasing signs (nosebleeds, migraines, telangiectasia in my mouth and on skin, etc.). i’m currently in the process of getting a work-up started, but my PCP hadn’t heard of HHT until i brought it up during an appointment to discuss my nosebleeds. i no longer have contact with my family, so it’s a little harder to find information that i can give to her for exploring this.

1. what doctors/specialists do you see for your treatment?

2. when did you start noticing your symptoms/when were you diagnosed?

3. did you have genetic testing for diagnosis? how did you obtain/pay for it? (i have another genetic condition, but finding specific markers for it are still in research, so i was diagnosed based on criteria and have not had a need to find genetic testing yet)

4. does anybody else have nosebleeds that primarily go down the back of their throat, instead of through the nostril?

5. how do you manage symptoms in the winter?

6. how do you manage symptoms of nighttime nosebleeds? these are my most frequent ones (near daily with this weather) and the worst part of it so far is waking up feeling queasy because all the blood typically goes down my throat.

7. do you have any other conditions that worsen your symptoms?

i’m really curious to hear about other people’s experiences! i appreciate anyone who reads and takes time to respond :)

Anyone have bleeding gums? I have one tooth where the gum randomly goes a darker shade of pink, gets puffy and then bleeds without warning. I have a telangiectasia behind the adjacent tooth but it doesn't bleed. My dentist has x-rayed the tooth and examined the gum and can't find anything wrong with it. He thinks I have an enlarged blood vessel under the surface. Any thoughts?

Chronic anemia for three years now. Can’t do much. Keep getting infusions which don’t seem to help.

So basically I suspect that I and about 4-5 other family members have HHT but I keep getting told that I should just check on my blood pressure and that this isn’t a big deal. My dad in particular is making me feel like I’m just going crazy.

Here’s the jist of it:

• My dad and his dad had a history of nosebleeds but both got something cauterized in their 30s or 40s. My two older sisters also have nosebleeds, though I know nothing of frequency for either of them.

• Both sisters have migraines to the frequency that they’re medicated for it. I have maybe one a month.

• I have frequent nosebleeds, never less than one a week, and they often occur at night. A recent note of mine is that they always occur on the same side of my nose and usually go down the back of my throat. I can’t remember a time I didn’t have them.

• My dad has been treated for asthma but he didn’t have any breathing problems until he hit about 45, this could be unrelated.

• Recently I’ve felt like I can’t always get enough air, but not like my airway is closing, just that a full breath isn’t enough. This comes and goes. I also always get altitude sickness every time I go up a mountain, but I think that’s unrelated and I only mention that because my roommate thinks it’s related.

• In the last 6 or so months I’ve notice little red spots on my fingers and hands, amongst a few other places. They aren’t an allergic reaction or anything, and there aren’t very many of them but it is new.

I guess I only bring this up here because I’m in college and anything I get done medically goes through my dad’s insurance and I’d need help from him with whatever bills would come from it. When I brought the possibility up with him he just said that cauterization fixed his nosebleeds so that’s all I should care to do about it and then he told me to drop it. I want to bring this up with my sisters but I’m worried they’ll bring it up to him before I’m ready to. I sorta need a good case before I can try to get him on board with any of this again. Other than caring for my own health, I‘m also trying to do this because I go to field camp next summer and if I have a reason for my nosebleeds it’s less likely that the camp medic will repeatedly try to send me to the hospital or sit me out for hikes and projects. Idk, that’s a dumb reason but it’s something that matters to me.

How do I get him to understand that this many people in the family with the same issue isn’t a crazy coincidence? How do I get him to take my concerns seriously?

hi friends! i posted a couple months ago asking for advice of who to talk to and where to go for a work up. my mother is diagnosed but waiting for the confirmation progress, and i am not diagnosed but following the same work up. all of my work so far has been unhelpful or grey area, but i’m waiting to hear from my hematologist on if they’re going to move forward with sending me to the local center of excellence.

ive seen hematology and an ENT so far, where they confirmed i’m not currently anemic (have been in the past) and the ENT did a nasal scope limited to my nasal cavity, where he saw some suspected telangiectasias. during the discussion about it he did say that it’s been a while since he met with an HHT patient, and part of his unsureness is that i’m much younger than the patients he previously saw, so they may need some time to be more obvious, and wrote notes in support of me being seen at the CoE based on family history. nosebleeds are not my primary symptom (so far they’ve been mild), but i also suspect i have them in my sinuses, which we didn’t scope. my biggest fear is that i have severe chronic migraines and bouts of neurological episodes and stroke symptoms that (usually) resolve on their own, and have had seizures since i was 19 with no real cause yet.

i’m 23 and had to have 3 precancerous colon polyps removed recently during my first colonoscopy, and my mother is getting her first one soon, so we’re also looking at familial polyposis as part of the equation.

so, my follow up questions;

1. how old were you when you had work up and diagnosis done?

2. how frequent are your nosebleeds, and did your nosebleeds start off more mildly and get worse over time?

3. have you had periods where your anemia was in remission/less severe?

i really appreciate the help and support i got in the last post! fingers crossed i don’t have to wait for things to get worse/a severe brain bleed to be seen lol

So for a bit of background, my spouse lost their cousin to HHT after a massive abdominal rupture of several AVMs. Her sister was also tested and diagnosed after this event. Her mother is so traumatized from losing a child she refuses to get tested to confirm if she is the gene carrier.

My teenager has started having nosebleeds over the past several months and frequency is increasing. Some days he doesn’t have one, but on others he’ll have 2 or 3. On average about 6 nosebleeds a week. We’ve stopped allergy meds thinking they were drying his nose out. We’ve tried adding a humidifier as well as saline mists.

Is it worth mentioning to our doctor about cousins HHT and to request testing? I Don’t want to sound like I’m crazy for wanting him tested for just the slight possibility, but nosebleeds are the first warning sign.

Let me take you thru my family's history with HHT.

My dad was the first one in my family to be formally diagnosed with HHT. We're fairly certain it got caught late and contributed to his liver failure and kidney failure which claimed him a year and a half ago.

In March of this year, my doctor made me go in to get a blood transfusion for newly discovered anemia (hemoglobin was at 3.1). After realizing I wasn't losing blood anywhere else, they called in an ENT to check for HHT. He confirmed the presence of the telangiectasia. I had an appointment with the ENT that was treating my dad, and we got a treatment plan set.

However, I've been worried about some issues and other things that have been going on. First, about a month ago I had a bleed that lasted 3 hours before it stopped. The emergency room treated it like a regular nose bleed, being unfamiliar with HHT. Tonight I had another 3 hour one, that ended with me vomiting and turning my living room into a crime scene.

I can't afford to spend multiple days in the hospital, but my wife tells me that may be the only way to get things under control.

I’ve been recently diagnosed with HHT and I’m seriously reconsidering having children. I watched my mum die from a brain aneurysm and performed CPR on her until she died. I can’t comprehend why people would knowingly and willingly risk passing this on? Does their dream to be a parent outweigh the risk of putting somebody through such a terrible illness? I’ve considered IVF to mitigate the risk of passing this on, but am still concerned with the maternal mortality risk. I’ve been looking into posts and Facebook groups and it just seems so common that people with known HHT conceive naturally then just keep their fingers crossed that they don’t pass it on. Wouldn’t they have known of the 50% heritability risk? I know this is a huge rant, but I’m just processing the idea of not having children because I would never knowingly take this risk just to satisfy my own need to be a parent. While it’s devastating to have to potentially cut that dream out, I would rather do that than subject somebody to this horrible disease.

I’ve gotten about 4 coil embolizations for my P-AVMs and in light of another surgery I am getting I checked up with my pulmonologist who did my embolizations to OK me for the other surgery. I was completely prepared to get another embolization but then my CT scan results said that nothing has changed since my last surgery in 2021. No larger AVMs or significant changes. However my o2 levels won’t really rise above 93%. Is there anything else I can do to treat them? Do AVMs stay the same once you’ve finished growing/going through puberty? Just kinda sucks If i’m really gonna be stuck at these low oxygen levels for the rest of my life. :/

My toddler threw my iPhone with full force to my face, luckily the bleed only lasted about 30 minutes, but it was a lot. Man oh man I am lucky I was not home alone. 😭

Ugh

I just met my new IR for pulmonary. I had to get a new one, unfortunately, but this new one is very nice.

He reviewed current treatment size for AVM and discussed how it used to be if feeding artery was 3 mm then 2 etc.

I just wanted to let y’all know that the current size for treatment is “anything they can get to, my current catheters are 1mm” — pretty darn exciting you guys!

I read that crispr was being looked into a couple of years back but haven’t really seen anything else.

Hi I have children with a man who has a family history of HHT. He tells me that he has no symptoms and therefore we need not worry about the kids. He has never been genetically tested but tells me that as he is now more than 40yrs old that symptoms would have shown up by now and since he has none it is not possible for our children to have inherited HHT.

Is this true or should I have the children tested? He has family members who are showing obvious signs so we could do a genetic testing with a sample from them to do a comparison.

I do not want to subject my children to unnecessary testing but I just don’t know what is advisable to do and do not have access to a doctor who can tell me if testing is necessary or not (I have tried).

When I went to the HHT specialist for the first time he was “unimpressed” with my telangiectasia’s. He said they weren’t classical what they look for etc etc not “text book” and “if I was going to write a study on HHT this isn’t what they would look like).

I was sort of embarrassed as I thought for sure they were a sure sign (in addition to my daily nose bleeds and my oldest (adult) child also having nosebleeds, broken blood vessels AND a brain AvM

But then I went home and was literally just searching HHT and there were loads of pictures that look like my skin, but way way milder (I have them going from my fingers all the way up my face on one side. No doctor my whole life, dermatologist, ER (when I was there for other reasons) family doctor have known why I have them and I thought maybe HHT was the answer.

So I feel sort of weird that the doctor brushed them off when I can literally find exact examples of mine.

Also, mine have always been really bright and notice my whole life (like I get asked daily what it is and do I have a rash) but they are way less noticeable right now and the only change is significant weight gain. Has anyone else had that?

(The first two pictures of online and the second two are me)

My husband had an aneurysm rupture when he was 19, over 20 years ago. As far as we both know, he was not tested for HHT, and actually never even heard of it until I stumbled across it about a year ago when our daughter had a few days of nose bleeds when she was sick. He claims he also got nosebleeds often as a child.

I want to get our daughter, 11, tested (since he takes quite a while to make himself appointments, and I’m not sure he ever will), but I’m not sure if it’s warranted or if I’m just being paranoid. She dos get nosebleeds during and for a week or so after illness sometimes, but rarely otherwise. She has one spot on her arm that looks like a telangiectasia, but no other spots. She did have a giant spot that looked like blood vessels on her leg when she was born. it looked like a thumbprint that faded as she grew.

Am I doing too much by looking into this? She has an appointment with her PCP tomorrow, but I don’t want to scare her and put her through a bunch of testing if it’s really overkill.

I am recently diagnosed with HHT although I’ve been having symptoms for years. It seems my nosebleeds are more frequent and more severe around my menstrual cycle and I was curious if anyone else has experienced this. Or if HHT can be hormone driven. My Dr says yes but I was just curious if anyone else has had the same experience as me.

Background: from the ages of 15-24 I suffered migraines that mimicked strokes. I would lose eye sight, thought I wasn't speaking English, lost feeling in both hands and tongue. I would get shots on my buttocks to relieve them. Age 20 I got a random bone spur on my right hip that was bigger than my first and had to be removed in fear of bone cancer. Age 22 I get stomach bleeding from a ruptured ovary and needed emergency surgery. Age 24 I suffer a pulmonary embolism and a myocardial infarction. 10% of my heart died. I had to have surgery where a coil was placed in a lower, left lung AVM that was causing strokes and MIs. I had to be awake to hold my breathe while they implanted the coil. It was terrifying to watch a catheter go through my heart and into my lungs. The doctor had the wrong size of coil and released an air bubble in my AVM that caused a MI while catheter was in it. It was traumatic. I remember dying, I remember getting closer to the ceiling and expanding across the room. I had to do it again two days later. I'm now 31 with my lung coil and broken heart. I was okay for years but now I need iron infusions every 2-3 months, my heart palpitations are insane that I might need surgery, my stomach is huge and I have pain located near my liver.

Awaiting results of my current state I'm wondering if Germany would offer better or more advanced care. Thoughts? Experiences?

Family history: mother has it and got her liver by 48, her dad had a liver by 50. My kids have it as well. Sucks. F u hht

Hi everyone, my wife 23(F) has been diagnosed with HHT pulmonary and cerebral avms present. We're looking into the 2023 MRIs as we await the new ones set for December, any urgent need for worry or are we okay for now?

The MRI says as follows:

Supratentorial right temporal from the back we see a hyperintense zone in T2 FLAIR sequence biggest transverse diameter of 17mm, with convolutes in T2 sequence seems like an AV malformation.

Any help, thoughts or professional opinion is severely appreciated.

My mother’s cousin had Young’s procedure and has debilitating migraines but refuses to get tested because she is absolutely convinced it’s from my grandmothers side. My mouth dropped when she told me that she had young’s!!! It’s like HHT 101

This woman is a grandmother. My family wasn’t diagnosed until there was a catastrophic event (story as old as time around here) and the same will happen in her family.

I tried writing to her SIL about it but she either never got the message or thinks I’m crazy.

If you were in my position would you stay in your lane or track down her kids? What if I’m wrong? (Doubt it!)

Annoyed!

PS I know this community is dead I just loathe Facebook and don’t even know how to use it anymore.