HEART UK - The Cholesterol Charity

Why join HEART UK - The Cholesterol Charity on HealthUnlocked?

✔ Stay updated with notifications direct to your email
✔ Chat with others experiencing your condition
✔ Get support from other patients


Your email address:  

Genetic Testing for FH

Aliwally
Posted by Aliwally
18 Jan 2012
7 comments

Today I got my results back for FH testing..all negative for the three major genes known to cause FH.
The whole process from start to finish has taken three years (includes test results which took 10 months!)
Please, I'm not complaining, I'm just telling people how it is in England.
Just weighing up whether all the aggravation has been worth it, on balance yes, but I wouldn't want to go through it again.

Leave a comment    See 7 comments

7 comments

Traci
Traci
18 Jan 2012
I am glad you have your results Aliwally, I am sorry it has taken so long though - this is most unsatisfactory!
So... the million dollar question - what do you have?

Reply to this

Aliwally
Aliwally
18 Jan 2012
Thanks Traci, good question! It could possibly be Familial Combined Hyperlipidaemia which doesn't have a single genetic cause and comes on later in life or it could be a polygenic hypercholesterolaemia (these words annoy me) which is the most common and basically they don't know what causes it.

Reply to this

DakCB-UK
DakCB-UK
19 Jan 2012
So - what happens next?

Searching heartuk.org.uk for "genetic testing" returned no results.

Reply to this

Aliwally
Aliwally
19 Jan 2012
HEART UK have an FH Guideline Implementation Team chaired by Dr Jonathan Morrell who spoke at the RSM Conference. Go to Health Professionals, then widespread media coverage and FH a Developing English Scandal.
Apparently, 27% of PCT's did not know whether lipid clinics in their area could carry out DNA testing. I should count myself lucky that I got it done at all.

Other people may not have such a "thing" about this, but for me DNA testing was the only way to confirm/exclude FH. If it was just myself, I don't think I would have pursued it, but my disabled daughter also had raised glucose and cholesterol levels and she can't fight for herself.

Reply to this

Aliwally
Aliwally
23 Jan 2012
Also just found a Facebook page especially for FH and they are asking a lot of questions about genetic testing. I am a Facebook member, but not a great user, but couldn't we unite in some way.

Reply to this

DakCB-UK
DakCB-UK
26 Jan 2012
Facebook is a walled garden. You cannot interact with it unless you agree to their terms. I would be very unhappy if HealthUnlocked started sending my details to Facebook.

Reply to this

Aliwally
Aliwally
26 Jan 2012
No, I wasn't suggesting that at all and I agree, I'm not a great Facebook fan either.
I did send a message to the group founder to introduce herself on this site as she is an ambassador for HEART UK but that is up to her.

If some people think this site is anti medical, just read some of the comments on Facebook. However, thank goodness we have free speech in this country and on this site as long as we are not abusive or malicious.

Reply to this

Leave a comment

You must be signed-in to leave an answer. Sign in.

Not a HealthUnlocked member? Join here.

Content on this site does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Views expressed are those of individuals and not of HEART UK - The Cholesterol Charity
Learn more (Opens in new window)

Spread the word!

Know someone who shares your health concerns? Tell them about this community!

Poll

What notice do you take of health/medical news stories reported in the media?

 or see results and comments

Security

Privacy-Policy-By-TRUSTe
Buy SSL
SSL CERTIFICATES - Get Info

HealthUnlocked

Communities

Guidelines

Policies

©2012 HealthUnlocked