How many people in UK have HHT?

HHT (hereditary haemorrhagic telangiectasia) is a heritable disorder that affects approximately 1 in 5,000 individuals. At present in the UK, most people with HHT are not diagnosed, though many will be aware that they, or family members, have frequent nosebleeds. HHT leads to the development of abnormal blood vessels.

How many people in UK have HHT?

HHT (hereditary haemorrhagic telangiectasia) is a heritable disorder that affects approximately 1 in 5,000 individuals. At present in the UK, most people with HHT are not diagnosed, though many will be aware that they, or family members, have frequent nosebleeds. HHT leads to the development of abnormal blood vessels.

What is the life expectancy of someone with HHT?

Our data demonstrate that patients with HHT have a poorer survival compared with controls. Median age at death was 77 years in cases with HHT compared with 80 years in controls, a decrease of 3 years.

Can you get disability for HHT?

In order to meet the listing requirements for Social Security disability benefits based on HHT, you must have bleeding severe enough to require three or more blood transfusions in the five month period before a decision is reached on your disability claim.

What percentage of the population has HHT?

The disorder is estimated to occur in approximately 1 per 5,000 people. However, because some affected individuals develop few obvious symptoms and findings, the disorder often remains unrecognized. HHT is known to be underdiagnosed.

Does HHT get worse with age?

HHT-related GI bleeding risk increases with age. Telangiectasia in the GI tract do not cause pain.

What foods to avoid when you have HHT?

Avoid certain foods. In some people, HHT nosebleeds are triggered when they consume blueberries, red wine, dark chocolate or spicy foods. You might want to keep a food diary to see if there’s any connection between what you eat and the severity of your nosebleeds.

Can you drink alcohol if you have HHT?

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.

Can HHT skip a generation?

HHT is an autosomal dominant (it does not skip a generation), genetic blood vessel disorder that causes bleeding in multiple organs of the body.

Does HHT make you tired?

Fatigue, shortness of breath: Some people with HHT may experience these symptoms because they have anemia — due to blood loss from nasal and/or gastrointestinal telangiectasias. The presence of lung arteriovenous malformations (AVMs) can also cause fatigue and shortness of breath.

Can you donate blood with HHT?

Can a person with HHT donate blood? Yes, as long as their hemoglobin, or hematocrit, is at an acceptable level.

Can HHT cause strokes?

Complications of HHT Lung AVMs can result in embolic stroke. This happens when a blood clot — that the small lung capillaries normally trap — passes into lung veins, via an AVM, and then lodges in and blocks small vessels in the brain.

Can someone with HHT donate blood?

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. Can a person with HHT donate blood? Yes, as long as their hemoglobin, or hematocrit, is at an acceptable level.

Does alcohol affect HHT?

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.

Can you take ibuprofen if you have HHT?

Acetaminophen, such as Tylenol, is recommended for HHT patients to treat minor aches, pains and reduce fever. NSAIDS (nonsteroidal anti-inflammatory drugs) such as aspirin, ibuprofen (Motrin, Advil), celecoxib (Celebrex) and others are not recommended for HHT patients.