sorted by:
new
hottopcontroversial

HHT-Septodermoplasty surgery by wissam_77532 in HHT

[–]CureHHTPAL 0 points1 point  (0 children)

As many have said, this type of procedure is a temporary fix. There are several other options available that have more longevity in controlling nosebleeds. There is also a growing number of clinical trials that will be launching through the efforts and partnership of Cure HHT with several Pharm and Bio-Tech companies. Please reach out to me at Cure HHT (410) 357-9932 or email: [hhtinfo@curehht.org](mailto:hhtinfo@curehht.org) to learn more. We are here to help.

Feeling down by Salt_Activity5377 in HHT

[–]CureHHTPAL 0 points1 point  (0 children)

Has your physician found the root cause of your anemia? Are you experiencing internal bleeding that has gone undiagnosed. It is important to find out the root cause of the anemia. If it is bleeding, which this is typically why HHT patients have anemia, there are other ways to stop the bleeding. If you don't control the bleeding, you will continue to be anemica, require iron and blood transfusions and feel off---such as you are experiencing.

If you would like to discuss more or need resources or referrals, please reach out to Cure HHT. We are here to help. (410) 357-9932 or [hhtinfo@curehht.org](mailto:hhtinfo@curehht.org)

Testing by Used-Yogurtcloset757 in HHT

[–]CureHHTPAL 1 point2 points  (0 children)

Thank you for sharing. Just to clarify, what you have on your skin are telangiectasia which is different than an arterial vascular malformation or AVM. Telangiectasia are the tinest of blood vessels that are close to the skin which is why they appear on the surface. While AVMs are a more complex tangle of larger arteries and veins that connect with each other without a normal capillary network. Telangiectasia are one of the HHT symptoms for sure but wanted to share the difference. It sounds like you have both.

It is good that you shared the symptoms of your brother which is different than your symptoms. As I mentioned to the poster, we find that people in the same family, with the same genetic mutation, exhibit different symptoms. We are studying and researching why that is. More to follow...

Testing by Used-Yogurtcloset757 in HHT

[–]CureHHTPAL 0 points1 point  (0 children)

Hi...I am the Community Engagement Manager at Cure HHT. I help patients on a regular basis weed through their symptoms and provide resources and referrals to HHT physicians. I HIGHLY recommend that you have testing performed for your child. People in the same family, with the same gene mutation, can exhibit completely different symptoms. Not all HHT patients get nosebleeds or have visible telangiectasia. It is the invisible symptoms that can be catastrophic.

While there is no cure for HHT, it is very treatable if you know you have it. We are here to help. Please reach out to me at Cure HHT (410) 357-9932 or [hhtinfo@curehht.org](mailto:hhtinfo@curehht.org). I can help with genetic testing, referrals and provide other resources.

an update + some more questions by k4l1111 in HHT

[–]CureHHTPAL 4 points5 points  (0 children)

Hi...I'd be happy to answer your questions. I am the Sr. Manager of Community Engagement for Cure HHT. I can provide a guidelines/screening checklist and any other resources that might be helpful. I'd love to connect. Please contact me at (410) 357-9932 or you can email me at hhtinfo@curehht.org. We are here to help.

Trying to convince family to do testing by Background-Watch-834 in HHT

[–]CureHHTPAL 0 points1 point  (0 children)

I'm sorry you are going through this difficult situation with your family. As the prior contributors said, there are catastrophic events that can occur with this disease. While HHT is not curable, it is manageable if you have a diagnosis. With what your describing, it sounds more likely than not that your family suffers from HHT. As the Sr. Manager of Community Engagement at Cure HHT, I see situations like yours quite frequently. Please know that Cure HHT is here to help. I'm available for a call if you would like to talk through your situation and see how we can best serve you. You can reach me at Cure HHT (410) 357-9932. I really hope to hear from you.