Who treats hereditary hemorrhagic telangiectasia?

Who treats hereditary hemorrhagic telangiectasia?

Otolaryngologists (physicians who treat disorders of the ear, nose and throat) commonly treat patients with HHT and nosebleeds. In particular, rhinologists (specialists in diseases of the nose, sinuses, and surrounding structures) frequently see patients with hereditary hemorrhagic telangiectasia and nosebleeds.

Is HHT an AVM?

HHT is a genetic disorder associated with small AVM (telangiectases) of the skin, nose, and GI tract, and larger AVM of the brain, lung or liver. The AVM in the lung and brain are treatable but because AVM can continue to grow/enlarge, patients need careful and continued monitoring.

How many people are affected by HHT?

What is HHT? HHT is a genetic disorder of the blood vessels that affects people of all ages and backgrounds. An estimated 50,000 to 100,000 Americans are affected by HHT, and most cases go undiagnosed. About 10 percent of people with HHT die prematurely or are disabled due to complications of their AVMs.

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.

How do I know if I have HHT?

HHT can be diagnosed by performing genetic testing. Genetic testing can detect a gene mutation in about ¾ of families with signs of HHT, which if found can establish the diagnosis of HHT in individuals and families who are unsure about whether they have HHT.

What does HHT look like?

Nosebleeds are the most common sign of HHT, resulting from small abnormal blood vessels within the inside layer of the nose. Abnormal blood vessels in the skin can appear on the hands, fingertips, face, lips, lining of the mouth, and nose as delicate red or purplish spots that lighten briefly when touched.

Can HHT be asymptomatic?

Liver vascular malformations are seen in up to 75% of individuals with HHT. In most cases they remain asymptomatic, though over time 10-20% may develop liver or heart failure.

Does HHT get worse with age?

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

Is HHT an autoimmune disease?

HHT syndrome has been described in association with autoimmune disorders, such as Hashimoto thyroiditis, lupus erythematosus, vitiligo, anti-phospholipidic syndrome and pernicious anaemia.

Can you give blood if you have HHT?

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

Can you cure HHT?

Men, women, and children from all racial and ethnic groups can be affected by HHT and experience the problems associated with this disorder, some of which are serious and potentially life-threatening. Fortunately, if HHT is discovered early, effective treatments are available. However, there is no cure for HHT.