Hht (do You Suffer From Nose Bleeds?)

[cfc1]

Has anyone heard of this or does anyone suffer from it?

Do you get nose bleeds and does any blood relative get them?

If so... read on.

I have just found out that i may have this its a genetic disorder of the blood vessels and is hereditory, my dad had this and died at a young age (47) he had suffered a brain hemorrhage caused by a bleeding blood vessel.. he also suffered from severe nose bleeds on a regular basis (a couple of bleeds led to him receiving blood transfusions), my aunt (dad's sister) also died from a brain hemorrhage. As a youngster i suffered from nose bleeds (none were too serious, but they were regular) and on the odd ocassion i still wake up in the morning having had a nose bleed during the night.

Another symptom is red/purple spots on the skin (hands and face mostly), my dad had these, so to did my grandfather (lived well into his 80's) and some of my dads 7 brothers and sisters.

I was going to attempt to explain HHT in my own words but i looked it up on google. The reason I am posting this is mainly because HHT has really only been discovered fairly recently, and as it seems to run in my family and i knew nothing about it i thought that maybe some of you may also have this problem.. it is also known as Osler-Weber-Rendu (OWR).

What is HHT?

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.

I am going to get a doctors appointment as soon as possible for me and my 3 kids (my wife isn't blood related, so won't have this) to get us tested for HHT.

More information on HHT can be found here...

http://www.hht.org/web/

[alanbradley]

Cheers for that Davy - I'll take a look into it...

I used to get them a lot when I was younger and still do occasionally when tensions are high. My Mum used to have them when she was younger too, but she had her nose cauterised when she was a teenager (has given her a dislike of orange barley water since :S )

A

[cfc1]

Alan.. i lost count of the times my dad had his nose and the spots on his face cauterized.. and like you, i get nose bleeds now and again, sometimes when tensions are high but mostly if the air pressure changes ( like the weather forcasts.. high and low pressures) my nose feels like its swelling up and i know that any minute i will get a bleed.

It affects 1 in 5000 people, so its not really that uncommon, so if you suffer nose bleeds, or any of the other symptons (spots on the skin etc) then it would be a good idea to get a test done.

HTT can be a killer, but lots of people live long normal lives, so don't panic, read the HHT website and if you feel that there is a chance you could have this.. make a doctors appointment.

[Demonic Angel]

Thats very interesting, Rich gets a lot of nose bleeds himself so it might be good for him to read up on this....

[cfc1]

A little update.....

Had an appointment at the clinic a few weeks ago and got the once over.. seemingly i do have telangiectasis on my skin.. and as such will be getting a lung scan and a brain scan to see if i have any AVM's in either of those places. Could take a while as they are still looking into the blood test results from me and other members of my family.