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General Information
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Pulmonary Arteriovenous Malformations
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The Nose and Hereditary Haemorrhagic
Telangiectasia
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Pregnancy and Hereditary Haemorrhagic
Telangiectasia
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Telangiectasia Self Help Group Newsletter NO-16
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TSHG Newsletter No 17 Part One of Two
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TSHG Newsletter No 17 Part Two of Two
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How to increase Iron in your diet
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Dental Hygiene Infomrtaion
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NHS Choices HHT Link
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The Telangiectasia Self Help Group was founded in 1985 to maintain a register of sufferers and to put affected families in touch with one another.
The group was initially funded by a donation from the Thames/LWT Telethon Trust. A newsletter is sent to all members on an occasional basis informing them of the developments in the treatments of this disease.
Hereditary Haemorrhagic Telangiectasia
( HHT ) also known as Osler-Weber-Rendu disease, was first described over 100
years ago. It is due to a faulty gene and is very variable causing some people
considerable distress whilst others escape with much less severe problems. For
many patients, nosebleeds are the main problem although bleeding from the lining
of the stomach and intestines occurs in about 20% of cases.
For further information or if you wish to become a member please contact :
Mrs Diana Lawson
Co-ordinator/Organiser
Telangiectasia Self Help Group
39 Sunny Croft
Downley
High Wycombe
Bucks
HP13 5UQ
ENGLAND
Tel : (+44) 01494 528047
or alternatively E-mail:
The Telangiectasia Self Help Group is affiliated to the following Support Groups :
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AVM Support UK provides patient friendly information and support to all those whose lives have been affected by the rare condition Arteriovenous Malformation |
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The Contact a Family website is for families who have a disabled child and those who work with them |
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The Genetic Interest Group (GIG) is a national alliance of organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders / genetic diseases |
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The HHT Foundation's new brand, Cure HHT, deepens and renews our commitment to the HHT community. We have one mission that drives everything we do to find a cure for HHT disease, a genetic blood vessel disorder that affects 1 in 5,000 people - 90% of whom are undiagnosed |
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The BMJ Opinion Covid-19 Home based exercise activities could help during self isolation |
VASCERN COVID-19 Recommendations |
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MedRxiv: Triage assessment of cardiorespiratory risk status based on measurement of the anaerobic threshold, and estimation by activity limitation in patients with pulmonary arteriovenous malformations and hereditary haemorrhagic telangiectasia |
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