How might HHT affect my lifestyle?
Cure HHT does not provide medical advice, nor does the printing of these answers constitute medical advice. For professional advice consult your medical caregiver.
As long as the lung and brain malformations are treated, on average, the life expectancy of people with HHT is not significantly altered.
Yes, as long as the pregnant woman has no untreated lung AVMs. We strongly recommend that all women known or suspected to have HHT be screened for lung and brain AVM prior to becoming pregnant, or during the early second trimester of pregnancy if a pregnancy is already in process. Serious complications, such as life-threatening bleeding and strokes, have occurred in pregnant women with HHT who had undetected and thus untreated lung AVMs. Otherwise, serious HHT-related complications for the mother or baby are rare. Some women report that new skin telangiectases developed during their pregnancy and that their nosebleeds worsen. However, some women actually report an improvement in nosebleeds while pregnant.
Dr. Felix Ratjen, Toronto Pediatric HHT Center: Regular exercise is important for everybody, and this certainly includes children who have HHT. Most children with HHT can participate in sports at all levels including competitive sports, but there are a few exceptions. Contact sports are not recommended for children with HHT who have brain AVMs unless they are completely treated; you should talk to your doctor about that, if you are unsure what the status is. For children with untreated pulmonary AVMs, if their oxygen saturation is not normal, strenuous exercise may put them at extra risk and I usually recommend against it until treatment of the AVM has improved the situation. Even if the oxygen saturation is fine at rest, this may change during exercise. In cases where this is not clear, I perform a formal exercise test in the clinic. This also often provides comfort to parents as the test can determine the "safe" level of exercise that their child can participate in. Scuba diving is the one sport that individuals with HHT should avoid because small lung AVMs may be present and cause "the bends".
Dr. Justin McWilliams, Co-Director of UCLA HHT Center: Alcohol has several effects on the blood which are relevant to HHT patients. First, alcohol acts to inhibit platelet aggregation, meaning the platelets that make your blood clot become less sticky, making your blood thinner. This explains why moderate alcohol consumption (1-2 drinks per day) is thought to be good for heart health, since it may help prevent formation of clots in the heart vessels, which causes a heart attack. However, in an HHT patient, thinning of the blood may cause worsening of nosebleeds or GI bleeding.
Alcohol consumption also causes vasodilation, meaning blood vessels can enlarge slightly- this in part can account for the warmth and flushing felt with alcohol. Again, this can be a favorable for narrowed or blocked vessels, in the heart for example, but dilation of the telangiectasias (and the arteries which supply them) in HHT patients could increase bleeding.
Anecdotally, alcohol (particularly red wine) has been one of the most common triggers of nosebleeds in my HHT patients. That being said, a large portion of HHT patients tolerate alcohol without ill effects, which underscores the complexity of the disease and of the blood clotting pathways, which cannot always be predicted in an individual patient. I counsel my HHT patients to enjoy alcohol as they wish, but to pay attention to whether alcohol triggers bleeding - if so, limiting or eliminating alcohol is a reasonable strategy to reduce bleeding.
Yes, as long as their hemoglobin, or hematocrit, is at an acceptable level.
Dr. Brian Graham, Co-Director of University of Colorado HHT Center: I have come to the consensus that it should generally be safe. I'd recommend you not have a tattoo applied to a visible telangiectasia, as that may bleed quite a bit. Be sure that the skin was carefully cleaned at the site, such as with rubbing alcohol, to avoid any infection, and probably avoid areas that are less sterile such as in the pelvis.
If you have known pulmonary arteriovenous malformations (PAVMs), consider being extra careful by taking a single dose of an antibiotic at the time of the procedure, to avoid any bacteria released from the skin passing through a lung AVM and going to the brain or other places in the body and causing an infection.
As a more general precaution, make sure they use clean needles (to avoid getting infected with HIV or hepatitis) and stick to reputable places, rather than doing it “homemade."
How might HHT affect other conditions?
Commonly Asked Questions
Genetics/Inheritance of HHT
Commonly Asked Questions