Sickle Cell Society please advise me of what you mean when you say the following!!

[benhudson444]

Could you please explain to me why on you website it adamtly states, and I quote "People who ONLY (are you for real?) Have Sickle Cell Trait do not suffer any of the symptoms of Sickle Cell Anemia. Sickle Cell Trait is NOT an illness and people with trait are completely healthy"

I feel that this is completely out of order, and misguides a lot of people in to thinking that when they are actually having a crisis that it is something else.

I for one know for a fact that I was admitted to hospital at 13 for a week, when I had chronic abdomen pain when the weather changed to winter. I continually suffer from pains and tiredness, and a number of other things. At the same time every year when the big temperature drop occurs.

I thought science proved that everyone is different when it comes to medical issues. So why are you painting us all with the same brush if some people don't have symptoms?!

I have enough problems with getting time off work due to this, and find that I have to take an extra couple of hours on a morning getting ready for work when the pain hits. But because of articles and statements like this it is making it harder for me to take time out when I need it. The added stress of constantly worrying about my job security due to an apparent NON ILLNESS, also doesn't help very much with my overall wellbeing.

There is a lack of support for people with SCT already, and to say that the SCS is supposed to offer us advice and the support we don't receive from GP'S. For you to say that it's is almost as if you're completely disregarding the SCT community.

[bluebug]

If you have a problem with information on a website email the site owners/runners with your evidence.

Make sure the email is short and to the point, and the evidence comes from research.

And yes medical charities do get medical information wrong. I've had to email another charity who didn't know the difference between allergies and intolerances. They corrected the information.

In the case of this charity their information hasn't been updated since they had the site up yet hospital trusts and other patient sites have update their information every 2 years.....