The story of Ted

I am 71 yrs of age, I’ve have HHT all of my life, my father, his three sisiters and his three brothers all had HHT. my aunt Nora bled to death with the condition in 1973, my brothers Pat and Johnny both had HHT. at present Eight members of my family also have HHT.

Living with HHT can be difficult for all members of our family, even those who don’t have the condition, I often wake up in the morning with my pillow covered in blood, I operated my own companies down through the years, when I would go to business meetings I would always carry a spare shirt and tie because more often than not I’d get a bleed, early on in my career it used to bug me but now I know I just have to deal with it. I sing in a faboulos choir, but I’m consious that when we are performing that I may need to rush off in the event of I getting a nose bleed.

It very important anyone having HHT that you go and have rugular screening in your brain, lungs, heart etc. Life is good look after yourself HHT brothers and sisters  Ted

 

*Find others with Hereditary Hemorrhagic Telangiectasia (HHT) on RareConnect, the online platform for people affected by rare diseases