Factor XI Blood Clotting Deficiency

PaddyJules · 27-08-2011 1:59pm #1

I have just been diagnosed with Factor XI (eleven) deficiency. Even though I am 42 years old, they have told me that it is hereditary so I have probably had it all my life. It is only been diagnosed now due to excessive bleeding after 2 recent operations.
Anyway, I am really keen to make contact with other people who have this deficiency and find out if it has had any impact on their lives. I currently need to have further surgery, however, my consultant now is 'strongly' against doing it, due to the blood issue. This is a huge set-back for me, as without this surgery (bowel related), my quality of life is very bad.
So is there any fellow factor xi deficient people out there and if so, have you been able to have surgery successfully. I know that on a day-to-day basis the deficiency has no impact on a persons life. It is only in situations of extreme trauma or surgery that the blood does not clot, but a simple cut to the finger for example, the blood would clot ok.
Thanks for reading my post.

byhookorbycrook · 27-08-2011 7:50pm

My husband's niece has it. She take her tablets everywhere with her. If she has to have a tooth out she goes to a particular dentist. It manifests in her in severe nosebleeds, but other than that she lives a fairly normal life.

angeldaisy · 17-09-2011 11:40am

have you been in contact with the Haemophilia society? http://haemophilia.ie/
they don't just look after people with haemophilia, they look after all kinds of bleeding disorders. My hubby and son have Von Willebrands and they have been a great source of help and information.

PaddyJules · 17-09-2011 3:35pm

Thanks for the advice - I will have a look at that website now.

angeldaisy · 18-09-2011 10:40am

PaddyJules wrote: »

Thanks for the advice - I will have a look at that website now.

thats no probs. I would also suggest you contact your nearest haematology centre. I know that the National Centre for Hereditary Coagulation Disorders (NCHCD) is based in St James' Hospital (see link). It would be worth contacting them, if you haven't already been in touch with them.

http://www.stjames.ie/Departments/DepartmentsA-Z/N/NationalCentreforHereditaryCoagulationDisorders/DepartmentOverview/

I know from personal experience that there is very little expertise in this field outside of Dublin, Cork and Galway. So it may be the case that you have to travel to seek expert help. I know that we have to travel to Dublin from Limerick for specialist treatment. the team based in the NCHCD are fantastic and will, I'm sure, help you as much as they possibly can

PaddyJules · 20-09-2011 12:38pm

Thanks angeldaisy. I was diagnosed in the NCHCD and totally agree that they are fantastic. I have been through alot of hospital recently in Dublin and can def say that the service, expertise and aftercare that the NCHCD offer is second to none. I am just keen to make contact with anyone else who has this deficiency just to get their thoughts and perspective on it. I am due back for a check up next month, so I might chat to them about it and if there is any support group or forums.

Factor XI Blood Clotting Deficiency

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