FAQ - Telangiectasia, Hereditary Hemorrhagic
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How bad is Hereditary hemorrhagic telangiectasia?

There is a 50/50 chance I have it because i inherit it from my mom. But how bad can it affect my life?

Well you'll get anemia and lots of reoccurring nosebleeds and will need bloodtransfusions. however if it becomes really bad you can get surgery to help you lead a normal life. All in all this is an expensive disease but eventually if treated right shouldn't affect your life that much.

PS you should get MRI's to see if you have one  (+ info)

Detection of Hereditary hemorrhagic telangiectasia?

How do you detect this disorder?
that is NO HELP!

If three or four are met, a patient has definite HHT, while two gives a possible diagnosis:
1. Spontaneous recurrent epistaxis
2. Multiple teleangiectasias on skin and mucosal linings
3. Proven visceral Arteriovenous malformation (lung, liver, brain, spine)
4. First-degree family member with HHT

If you have more question, u can post them in:
http://med50.blogspot.com/2010/04/patient-education-program.html  (+ info)

Who discovered hereditary hemorrhagic Telangiectasia (HHT). It is a genetic disease. Also how did they?

Also if possible what is the history of HHT. Any facts about HHT's history is appreciated

It sounds like you are more interested in the history of the disease than the facts about the disease process. HHT used to be called Osler-Weber-Rendu, named after three different physicians who each played an important role in our current understanding of the disease.

- Earliest descriptions of the disease: The disorder was first described by Dr. Henry Gawen Sutton in 1864; in 1865, Dr. Benjamin Guy Babington published a description of epistaxis (nosebleeds) in five generations of one family, and Dr. John Wickham Legg described the disease in 1876.

- DR. RENDU: The condition was first differentiated from hemophilia by Dr. Henri Jules Louis Marie Rendu in 1896, who published a report of a 52-year-old man with recurrent epistaxis. He noted telangiectases on the man's face and trunk and on his lips, tongue, and soft palate and speculated that his epistaxis resulted from lesions in the nose. Dr. Rendu noted that the patient's mother and brother had also had copious epistaxis.

- DR. OSLER: Dr. William Osler's description in 1901, in which he credited Dr. Rendu's report, established the condition as an inherited disorder: "In the three cases here described, two belonged to a family in which epistaxis had occurred in seven members. Both of my patients had had bleeding at the nose from childhood, and both presented numerous punctiform angiomata on the skin of the face and of the mucous membrane of the nose, lips, cheeks and tongue. The third patient had suffered in an unusual degree from recurring epistaxis, and the telangiectases were most abundant over the body, and very numerous also on the mucous membranes. The condition has nothing to do with haemophilia, with which the cases had been confounded." In the autopsy of a man who died of gastric cancer, Dr. Osler noted that the viscera could be affected: "In the stomach there were a dozen round foci, each 3 to 4 mm in size, which at first looked like ecchymoses but were dilated venules and capillaries."

- DR. WEBER: Dr. Frederick Parkes Weber followed in 1907 with a clinical description in a report of a series of cases. He invited Dr. Osler to see his patient. Dr. Weber wrote: "On the fingers, and notably under the fingernails, there are several minute (pin-point) red angiomata, which I had not observed until Professor W Osler, when he recently saw the patient, kindly drew my attention to them".

- HHT or Osler-Weber-Rendu: In 1909, Hanes coined the term "hereditary hemorrhagic telangiectasia", but the triple eponym Osler-Weber-Rendu survived and has gained universal acceptance. More recently, however, there has been a shift back to the term hereditary hemorrhagic telangiectasia or HHT.

Hope that's helpful!  (+ info)

What can be done about HHT, hereditary hemorrhagic telangiectasia, which causes torrential nose bleeds.?

i have heard of dr's lasering the vessels closed to prevent any more bleeding  (+ info)

Hereditary Hemorrhagic Telangiectasia?

I was just wondering how many people actually know about this disease/syndrome otherwise known as 'osler webber rendu syndrome'. as I was diagnosed with it a few years back and my hospital had last seen a case of it 15 years before me! if your curious about it check out HHT.org

Its a genetic disorder of the blood vessels also known, in larger vessels as arterioveneous malformation or AVM. It can cause rosacea like redness as well as many other problems. I'm not that familiar with it though. But, I do know it exisits. Discussed it in class before. : )  (+ info)

living with HHT (Hereditary Hemorrhagic Telangiectasia)....?

at fourteen years old, i was diagnosed just two weeks ago with HHT. after a positive echo bubble, i had a lung ct scan and a brain mri done. the mri was clean, thank god. but the lung ct scan showed two AVMs. (they were around 3mm, but my doctor here in MI is sending the ct scan results out to my mom's, who also has HHT, doctor at Yale.) while i wait for the for sure answer on whether or not i will need coil surgery, i just ahve to ask.

has anyone had the procedure done?
did it take long? was it painful?

do you have a scar? if so, where?
do they put you under medication while they operate, or simply leave you concious?

any answers or stories will be appreciated.
thanks in advance. :]

Please see Google search for more details on Hereditary Hemorrhagic Telangiectasia  (+ info)

this is for the doctors it is about hemorrhagic telangiectasia also known as oslo weber rendu syndrome?

so i have to do project for school and i was wondering HOW it can be detected prenatally. i know that it is possible but like i dont know exactly how. so any information would be very very appreciated. thanks a bunch

Nangami g,
The diagnosis of hereditary hemorrhagic telangiectasia (HHT) – also Rendu-Osler-Weber disease, Rendu-Osler-Weber syndrome - is based on family history and the presence of cutaneous or mucocutaneous telangiectases or large visceral AVMs. HHT is caused by a mutation in either ENG, the gene encoding endoglin or ACVRL1, the gene encoding the activin receptor. Molecular genetic testing of these genes detects mutations in 60-80% of individuals with HHT and is available on a clinical basis. You may find the link which I add of some assistance in preparing your project. I wish you well.


Hope this helps
matador 89  (+ info)

what is Hereditary Hemorrhagic Telangiectasis?

All I know is that its a disease that deals with blood.

Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder of the blood vessels which affects about one in 5,000 people.

Most blood vessels in the body of someone with HHT are normal. However, a small percentage of the blood vessels in a person with HHT have a specific type of abnormality.

Blood vessels are the tubes that carry blood around our bodies. There are two types of blood vessels: arteries and veins. Arteries carry blood under high pressure out to all areas of the body after being pumped by the heart. Veins carry blood that should be under low pressure, on its way back to the heart. An artery does not usually connect directly to a vein. Usually there are very small blood vessels called capillaries that connect an artery to a vein.

A person with HHT has a tendency to form blood vessels that lack the capillaries between an artery and vein. This means that arterial blood under high pressure flows directly into a vein without first having to squeeze through the very small capillaries. This place where an artery is connected directly to a vein, tends to be a fragile site that can rupture and result in bleeding. We usually call a blood vessel that is abnormal in this way a telangiectasis (tel-AN-jee-eck-TAZE-ee-ya), if it involves small blood vessels. We tend to call it an arterioveneous malformation (AVM) if involves larger blood vessels. So, an AVM might be thought of as a big telangiectasis. The basic abnormality in the blood vessel is the same.

Telangiectases tend to occur at the surface of the body such as the skin and the mucous membrane that lines the nose. AVMs tend to occur in the internal organs of the body. The telangiectases (plural for telangiectasis) and AVMs of HHT occur primarily in the nose, skin of the face, hands, and mouth and the lining of the stomach and intestines (GI tract), lungs and brain. It is not currently known why these abnormal blood vessels tend to occur in certain parts of the body and not others.  (+ info)

What are the cause and effects of hemorrhagic diseases?

It would be best if you could also include the nature of these diseases and prevention methods. Examples of hemorrhagic diseases would be appreciated :)

put everything about hemorrhagic diseases if you can :) THANK YOU!

A hemarrhagic disease is any disease that causes bleeding.

There are thousands of hemorrhagic diseases - way too much for Answers.

Best you narrow things down a bit.  (+ info)

How long to recover from a hemorrhagic contusion?

I had suffered a hemorrhagic contusion to my left frontal and parietal lobes in a skiing accident.

How long does it take to recover completely from such an injury?

I'm 51 years old.

I did see a neurosurgeon and he said I was lucky as it did not involve any "vital" area of the brain. I'm almost 99% recovered already 4 weeks after the accident so I guess I was very lucky. If I had no helmet on I would be dead. Back of my helmet was crushed!

have you seen a neurosurgeon? Every case is so different, without an examination and appropriate MRI, MRA and neuropsych eval it is impossible to gauge yor progress.  (+ info)

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