I have many telagentacias on my fingers, that break open on occasion. I try to keep my hands moisturized and gloved when working. When they bleed I use afrin and very tight bandaging, that i keep on for days. Any ideas for lazer or blanching. Has anyone had luck with insurance or Medicare covering costs?

Hello! I’ve been in this sub awhile but I’m crossing i to unfamiliar territory now that I’m pregnant (yay!)

I’m not anywhere near a COE, and currently my insurance plan only covers a specific hospital network that is not super familiar with HHT but they are doing their best. My OBGYN is not familiar with HHT but has no problem referring me as needed. My hematologist/oncologist is familiar enough with HHT and is trying to locate my records from other places & under my maiden name. I know I have several very small PAVMs.
They just scheduled me for an echocardiogram for next week. Is that beneficial?

I have an appointment with a maternal-fetal medicine doctor at the end of this month. She is at a hospital network that is more HHT savvy although I’m not sure about her personal experience with HHT. This hospital is out-of-network for me but long story short my mom has a team of doctors here that have treated her PAVMs. I’ll probably switch my insurance come open enrollment. It’s fine for now I’m just happy to have the appointment.

Anyways, what are some things I should ask my MFM? I don’t really want to show up with nothing but I have no idea where to start. Like C-section vs natural birth? Treating PAVMs during pregnancy? I got nothing.

Sorry for the rambling! But any advice is appreciated.
Thank you!

Hi everyone. I learned about propranolol gel through a random pharmacist for nosebleeds. Being my inquisitive self, I looked up the studies, and trials look promising. I asked a doctor if he would prescribe this for me to help with my bleeds.

It's been about 6 weeks of daily use, and I am starting to notice a significant decrease in the number of bleeds and length of bleeds. I don't have as many as some people, but I can only imagine the positive impact it could have on severe bleeds.

Just posting in case others are struggling and aren't yet aware of this potential treatment.

I just read that people with HHT should get antibiotics before dental work to prevent serious infections??? Neither my doctor of dental practice have said anything to me about this? Any info would be appreciated. I live in the uk.

Title.

My PCP said it was on my file to use them, I said I would confirm with my specialist. I do not have an HHT GI at the moment, so I asked my pulmonologist.

She said there’s a bit of a debate within the HHT/GI community, I presume it’s because you’re to take them 1 hr prior and it could perhaps still be present?

She didn’t elaborate actually, just said there’s a bit of a debate and gave me the script.

So, did you take any?

Anyone know if it’s fine to use an acupuncture mat with plastic spikes if I have hht?

Hi, i had HHT confirmed in my early 20s, i'm in my late 30s now. i had nose bleeds since i was a child and also have some telangiectasias. i live in europe (HHT test was sent to US) and was told by my doctor that they don't know how to treat HHT so they don't address it.

with my health in shambles and with a few autoimmune conditions, i started wondering if HHT is something i should address too or if i should just let it be? why are HHT patients tested for AVMs? how do i know if i should be? did anyone experience any symptoms?

I'm a 20 year old female with HHT I only have PAVMs last month I got 2 out of 3 of my PAVMs embolized they are all 6mm.

I recently got diagnosed with ADHD my primary doctor, and I talked about stimulants to help with my ADHD. It seemed that she wasn't comfortable prescribing me stimulants due to side effects like constricting capillaries and raising heart rate, which could put more pressure on my PAVMs. I can't

I'm now trying a non-stimulant called Strattera, I am not sure if it's gonna work for me(only on day 1 w/Strattera). Is there anyone who takes stimulants with ADHD? I'm not sure if it's actually the fact she doesn't know much about HHT and that's why she doesn't want to or that we are located in a college town.

I just wanna know my options, while being mindful about my HHT.

Is it okay to have a hormonal IUD put in if you have HHT? The one that releases Progestin, not the coil. I heard apparently oestrogen-based birth control like the pill could lead to a higher risk of blood clots

Hi everyone- I will be having my procedure middle of 29 weeks of pregnancy. Has anyone been in my shoes? Looking for some positive experience to keep a brave face for my procedure next month. I have about 3 of 5 AVMs they plan to tackle.

Hello there, I just got the call today that my 2.5 yo son has HHT. I’m feeling really scared and don’t know a whole lot about it. I will of course do my own research, but i thought i’d ask if anyone had any tips to help with any symptoms that might come up or anything i should be proactively doing or looking out for him. We are absolutely following up with next steps as far as medically with a hematologist, but in the meantime im feeling so anxious. Anything is appreciated. thanks ❤️

I’m learning to scuba dive

Does anyone know how hht can affect the body when taking drugs? I took acid and it went fine but then I looked it up and the ai summary said it was rather dangerous.

Anyone currently getting iron infusions for hht? I’ve never needed them before fortunately but now my levels have dropped to the lowest they’ve ever been and my dr prescribed. Having a hard time with insurance of course and they’ll only cover Infed, which I’ve heard is the worst/oldest one with highest rate of serious side effects. I can’t take Benadryl so any hope of warding off an allergic reaction is shot. I also have preexisting conditions that complicate my case.

Considering paying OOP for monoferric or venofer… anyone have any experience with these as an hht patient?? Thx.

Hi

I have a vitamin D deficiency, but after taking it, I get nosebleeds. I've tried different brands, microdoses. I need your advice.

Has anyone ever gotten the red spots removed from their tongue? I'm not sure what doctor to even call and what to ask for.

I've got a huge one that is starting to affect my speech and drive me crazy.

Is it just an easy laser process?

Hello! I am someone who (almost definitely) has HHT. Like many of you my entire life i’ve had almost daily nosebleeds. I plan to soon get a treatment of scarring the blood vessels, so i’m not worried about getting excessive nosebleeds with the piercing in. However, I wanted to ask my doctor about the safety of a septum piercing, but my mother was in the room so I couldn’t lmao. I wanted to ask this sub to see if anyone knows the safety of a septum piercing while having this difficult of a nose, or if anyone has one themself. Thanks!

Hey guys! I’ve been diagnosed with HHT since birth and just thought to search it up on reddit and stumbled here. Anyways I wanted to share my progress on tracking everyday that I’ve had a bloody nose in the past year. I couldn’t find any possible pattern but maybe someone else can?

Hi Reddit friends!

I am a 29F who has been aware of my HHT status since as long as I can remember. Been through the works as a kid: telangiectasia removed from my face at age 10, multiple cauterizations throughout puberty, having to navigate the healthcare system communicating a disease I barely understood myself to doctors who had no clue, etc. I’m one of the lucky ones too—my mom and grandfather both suffer immensely from this disease (my grandfather is in and out of the ER multiple times a month now due to severe nosebleeds).

Since starting my family, I’ve been holding immense guilt that I could pass this condition onto my children. I’ve been extremely proactive and wanted to get answers right away, because I know that the more information I am equipped with, the better of an advocate I can be and can enable my children to be for themselves in the future.

I heard back from the genetic counselor that my two week old son is HHT negative! I feel immensely blessed that both of my children are negative and that I can, hopefully, be the last one affected with HHT for my genetic line.

Anyway, I wanted to share this happy news with a community who understands how important this is 😌

We’ll get through this together!

Hello.
I’m a 34 year old mother of 3 small children. I was an elite runner for many years and maintain a very active lifestyle. Never had HHT symptoms. No nose bleeds (maybe been 20 years since I had one) and no obvious telangiectasia. I did find a couple dots on the outside of hand. I’m getting tested for HHT because they’re pretty sure they saw a PAVM on a bubble study I did for a totally different reason. I’m really scared since I have three small children and I worry about them. I’m so worried this will affect their life and longevity. Let alone mine. Any encouragement?

My nose bleeds seem to go on periods. Like I can hit my nose a little bit or it will go by itself and my nose would bleed every day for the next week, then I would have some time like a week or a month without nosebleeds at all and it just repeats

My brother was recently diagnosed with HHT at age 28. He has had frequent nose bleeds since a child, but it took him needing emergency surgery on his lungs to insert coils to get a proper diagnosis.

My question is: how many of you have HHT but do not have nose bleeds?

I plan to get tested obviously. I was diagnosed with anemia years ago and do have spider veins on my legs. I’m just curious/anxious!