I'm continuing with the Sesame Seed oil, and the improvement is continuing - I shall certainly go on using it.  Has anyone else tried?

Terry.

Hi,

I tend to get very bunged up when flying & know I'm going to bleed but always seem to manage to hold off until I get to hotel / home.  I fly a lot for work and have never had a real problem.  Even better since I had laser surgery

hi went to the conference, but I am not a patient at hammersmith, so didn't know we could stay at hospital!
  The Lung specialist Dr James Jackson was well informed and enthuisiastic, reckons we should all be body scanned and treated with shunts if needed. Prof Helen Lund ENT
expert just seemed a tad to eager to go down the road of Youngs procedure for my liking, but I have big problems with my tongue and throat, so I am maybe biased. The Gastrointestinal guy,DR Andrew Thillainayagam should have
been a stand up comedian, he was very friendly easy to talk to, admitted we are all different and was posative in his attitude to help and care for us in any way he can. The
workshops were you could talk to them and other patients were very very good. The talk on different forms of iron treatment was productive but personally when the genetasists start on the cookson mouse my eyes glaze over!!!!!!!!!   My only beef was why there is not a dermotologist on the team as it was evident that a lot of
the people there wanted to speak with one?  Talking to other HHT'ers it was obvious that a good laser suite was needed, a lot of people in my mind are suffering  for no good reason,one lady in her late twenties was there representing her dad he doesnt leave his house any more
because of such bad facial markings, she herself had also just been confimed as a HHT'er, another lady had large lesions on her lips and was distraut as her little girl will not kiss her any more and tells her she looks like a monster, after asking around we tried to find help in her area and a lady came forward with some helpful information, but it shouldn't come to this, surely help should be more readly available. Anybody in the north of england should ask to be referred to Dr Rob Sheehan-Dare at Leeds General Infimary, you may have a wait but he operates the largest
laser Dept in the north, the mans a genius.

My oldest daughter (6) gets nosebleeds, but the other two have had no symptoms.

My husband's sister died of a ruptured cerebral AVM in 2002.  I did my own research on AVM and concluded that the family must have HHT (lots of nosebleeds).  My husband had the genetic test and it confirmed an ALK-1 mutation.  His dad, two sisters and one brother all got tested and all have it.  Another sister has it clinically and one brother hasn't been tested yet. 

We live in the United States and I think that makes everything easier.  There is a huge fear of being sued among doctors so they are usually willing to do lots of tests on patients to make sure nothing gets missed.  I don't know if that is a good thing or not, but it drives a lot of medical decisions here.   

I also disagree that cerebral AVMs are not treatable.  Even if it was in a location that couldn't be treated, I would want to know if my daughter had one.  I would alert the school/daycare, have her wear a medical bracelet, etc.

Aimee

Hi Aimee,

So sorry to hear about your husband's sister.
The approach to testing etc does seem to vary greatly between the UK and US.  It doesn't make it easy here having to fight for screening etc, as like you I agree that it's better to know.  We will keep on fighting.
Take care
Diane