Need Help on a School Report, Any Answers appreciated

[Ghost]

For my Biology Class, i was assigned a report and the i was assigned to HHT. At first i thoguht this was "stupid", but after i started researching it, i realized how many ppl suffered from HHT and i have handled this report in a more mature way.  I started taking everything i read seriously and finished my research for this report. However the last stage of the research is to interview somebody who has the disease or a person who has contact with someone who has the disease. This might be rude, but could you  please help me out? If you could, I would be very thankful, and if you dont, i understand.

I am supposed to find out: What it is like to live a day in the life of a person who has HHT-what special accommodation must be made, how their life is different from someone without the disease.

Thank You, any answers are appreciated.

[philbarto]

Hi there
                I reckon you may get a few replies to your question I am 59 years old inherited HHT from my Dad along with one other sister at first you do not notice but as you get old red spots begin to appear round the lips andtongue and as Im led to belive stomach gut etc ap[perently in a desdending order of seriousness nosebleeds stomach gut lungs and brain as I got to 40 or so the nose bleeds increaded over the next 15 years both in length of bleed and the volume of blood lost in time a normal blood count is around 14 following a few serious nosebleeds over a couple of days it would fall to 6 then it was blood transfusion time and about four units were put in but it only lasted till the next series of bleeds fortunately I found and you have to find an understanding doctor and betweenus and info from the web discovered Youngs procedure or nasal closure I had a full both nostrils nasal closue two years ago and I have not had a single nosebleed since my bloos countis around 12 but I do have bleeds from inside my mouth(not serious) but I am going to have lazer treatment I aslso have following a cat scan a PAV inmy lung for which I will have a small coil fotted to block off that blood vessel I will then have cat scans yearly to check for more. After joining this site I have foud myself humbled by more serious cases who will share their experience with you it is only thro these forums that we learn of t5reatments and symptoms of this little known problem.I hope this helps and remain available should you require any further info    regards   Phil

[philbarto]

Hi everyone, it seems to have gone a little quite on the discussion front either that or we are unwilling to share our little bits of info etc any way just to try and get the ball rolling a little so to speak I am awaitimg an appointment to have some laser work done on the roof of my mouth I have not had any previous laser treatment and would definately appreciate any info on what to expect etc also I am going to have treatment done for a lung PVAM or whatever they call it they apparently fit a small coil into an offending blood vessel entering through the groin etc again I have had no experience of this and would likewise appreciate any info as i would appreciate sharing any other experiences we all may have had, looking foward to the replies
best regards   Phil

[bob]

Hi Phil,    Just a line in response to your proposed laser treatment, no two ways to put this as I am no great supporter of either cauterisation or laser as I have had my fare share of the treatments, and it did not work for me at all.
The opposite really as both have a drying effect if done too much making it more possible for a bleed to start.
 
Anyway Phil I must stress that I never was lasered in the mouth, just the nasals and it involves as I am sure you will know a general Anaesthetic And it is all over in no time at all, in and out the same day, I was not that lucky though but got out the next day the last time.
When you next see the consultant check on the type of laser to be used, check the net as I am sure you will know there are various types for differing applications.

All the best Phil I am sure it will be good for you, and of course nothing ventured nothing gained.

BOB……………..

 

[surefire]

Hi Phil,
New poster here. I'm 64 and I have HHT. 100+ cauterization's over the last 40 years to my nose. Nothing left but scar tissue and a rather LARGE hole in the septum. I did have my tongue lasered 2 years ago. A red spot developed in the center and in 3 months it was the size of a pea. Of course it broke open during a dinner engagement and freaked out the whole restaurant. It was the worst bleed in memory. Looked like Gene Simmons of "KISS". I used powdered ALUM to get it stopped. Two days later laser surgery. No Problem, easiest of all cautery's. Very little pain and the spot disappeared completely. I have cauterized my, nose, scalp, ears, mouth, colon over the years. NO alcohol, aspirins, or blood thinners of any type. In retrospect, I would not have done any cautery to start with. Management with polysporin is the order of the day. No more cautery for me if I can help it. I have a mild case of HHT compared to others on this thread. My father had a FAR worse case of HHT than me and lived to 87. He used a mixture of Alum powder mixed with polysporin to coat the inside of his nose. He died of a unrelated problem. My heart go's out to all with this dreaded disease.

Regards Brian