The Knowledge Board:
sickle cell disease
Hi I'm Belinda
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The Patient Connection would like to welcome you to our first blog to discuss sickle cell disease and in particular the process of genetic counseling for potential carriers of the condition.
We are interested in your views as patients, friends, family or healthcare professionals on sickle cell disease.
In particular we are interested in the following questions:-
• Have you ever been through genetic counseling yourself? Has a friend or family member?
• How do you or they feel about the process? Was it conducted in a supportive fashion?
• Should it be compulsory or an individual choice?
• What could be done to improve the process in your view?
• Were counselors supportive and informative after counseling?
Of course we would appreciate any comments you might have on sickle cell disease in general.
Please feel to contribute you thought and share your experiences. All you need to do is type a nickname of your choice and the put your comments into the box. Your comments are anonymous of course!
I look forward to reading your comments
Best wishes
Belinda
Belinda | 17/04/2007 09:53:00
Thanks for visiting Please feel free to contribute your stories to this discussion
Leticia | 17/04/2007 12:26:00
I am glad you brought this subject up - the support we received was tremendous early detection and after support was great - although the painful decision was left to us
Jamaica65 | 18/04/2007 07:49:00
I have never had any genetic counseling, but I believe it should be a standard protocal for people suffering from sickle cell disease.
kadi | 18/04/2007 20:24:00
i was working in KSA, east provence where sickle cell is epidemic , means lots of them have it ( whole families) , but still live with it , marry & have children with more sickle cell .many of them were my friend& i knew thier cases very closely .as far as i know there is no genetic counselling there.
Belinda | 26/04/2007 12:59:00
Sickle cell and Thalassaemia research project in the UK – take part and get rewarded with £10! The Patient Connection would like to take this opportunity to invite you to a new project. It would be great if you would like to participate in this important research. We are interested in talking with patients with either sickle cell disease, Thalassaemia or MDS who live in the UK. We are interested in finding out about compliance with treatment regimes so though we would post this to see if you are interested in participating. We would like to invite you to participate in a 15 minute telephone interview for which you will be rewarded with £10. Could you or perhaps someone you know meet some of the below criteria? • Have you, a friend or a family member been diagnosed with sickle cell disease, Thalassaemia or MDS? • Are you or they taking an iron chelation therapy? This could be Desferal, Ferriprox or Exjade. As a bit of background information to help know if you qualify:- “Iron chelation medication is necessary in those receiving regular blood transfusions as excess iron accumulates in the body as a result of blood transfusions and this iron must be removed or it will cause severe damage to such organs as the heart and liver. Iron is removed through a process called "chelation," whereby a drug is introduced into the body that binds with the iron molecules and removes them in the stools or urine. There are various different Iron chelation medications available. A subcutaneous drug known as Desferal is commonly used in patients with Thalassaemia, Sickle Cell Disease and Myelodysplastic Syndrome and newer oral tablets such as Ferriprox or Exjade are also now available.” If you wish to take part please just email me at Belinda.shale@thepatientconnections.com giving a telephone number where we might be able to reach you to confirm a few more details. Alternatively, please call myself or Bina on 0208 768 3806. The research ends on the 3rd of May so it would be great if you could get back with us before then. On the other hand please get in touch if you know someone who might be suitable. If the person you recommend does participate in the study then we will reward you with £5 for the introduction! Thanks for listening Sincerely yours, Belinda Shale The Patient’s Voice- Community Manager Belinda.shale@thepatientconnections.com
Ron | 18/01/2008 00:21:00
A treatment for SCD has been developed in Nigeria. It is a naural product made from plants. Most patients using it have gretly reduced number of crises and severity of the crises.The product is called Nicosan and is avalable in Nigeria. Hopefully it will not be too long before it is available in other parts of the world.I agree that genetic counseling is very important.
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