What are the Issues Regarding Sickle Cell you would most want us to address?

[CarlottaO]

This could be anything from socioeconomic, psychological, crisis management, nutrition and anything in between!! This is your forum!

[MrDJStl]

The lack of funding for research for a permanent solution and cures for SCA instead of temporary and addictive patches (narcotic painkillers)

[Bluebells in reply to MrDJStl]

YES! I agree with you. Many sickle cell sufferers become addicted to the narcotics.

[CarlottaO Sickle Cell Society]

Bone marrow transplantation is definitely one "solution" or "cure" for people suffering from SC however there are issues regarding the cost of the procedures and the location of donors. At this point in time, it seems the most feasible way to deal with symptoms is management with analgesics.

That being said, I do totally understand where you are coming from and the use of narcotic painkillers can lead to their own adverse effects such as addiction as you mentioned.

The Sickle Cell Society is committed to providing advocacy for people affected by Sickle Cell Disorders and we are involved on a daily basis in advocating for better care for sicklers in the UK and around the world. Thank you for your contribution.

[Bluebells in reply to CarlottaO]

I am so glad I found this site. I think sickle cell patients need medical and emotional support. Of course the drugs they are given because of the intense pain can be addictive. This disease is devasting to the patient and their family. I want a direct contact with the society. How can I contact you ?

[Fayona]

The psychological, emotional and social aspects of sickle. Most information about sickle focuses on the medical side. While this is very important, the other aspects of sickle are often overlooked even though they have such a huge impact on the quality of life for someone with sickle cell. I would like family, friends, educators and health carers to be aware of the importance of a good support network - especially for children.

[Meeshie81]

I would agree with Fayona, on the psychological, emotional and social aspects.. But I personally feel that adults are forgotten, since I turned 18 I've found things pretty difficult, I'm 31 now and struggle with work & financial issues, and I don't feel supported. Also there's little information out there on other issues such as starting a family as a woman with SCD.

[Bluebells in reply to Meeshie81]

You are eligible for Social security disability.

My daughter is 31 with a child. Without family support, I don't know what she would do.

[Alisonsellers]

As patient care gets better and the average lifespan increases, it is important to think about the socio-economic aspect of living with chronic illness. Despite Disability regulations, employers are still likely to employ disabled people whose disability does not prevent them from showing up at work. Careers counselling at school, work from home opportunities and more research into how sickle cell patients can be empowered to live a relatively successful life by focusing on the strengths they can offer would be a very welcome way forward for many of us.

[Bluebells in reply to Alisonsellers]

Thank you so much for your positive attitude. I cry everyday when I think about my adult child with sc. I worry about how she feels about her life. I feel guilt because my ignorance caused her to be sick. Testing wasn't mandatory in the 80s!!!

[Luvnuallways]

Please put some focus on the reality of sickle cell trait causing symptoms. I am suffering some of the same issues that I am reading about in ppl with scd but bc I am only AS most ppl (doctors) don't believe me. I have already undergone expensive unnecessary testing that someone with scd would not be subjected too when the symptoms are classic as mine have been. I also have had delay in treatment which has lead to inexplicable pain and suffering. My career has suffered and the medical bills are horrendous Now I am also watching two of my children suffer as I have.

Why is it so beyond anyone's ability to accept that you don't have to be a pro athlete or climb a mountain to have problems with only a sickle cell trait diagnosis? Most diseases are a spectrum. Why is it so hard to accept that the same may be true of sickle cell and trait? Even among people with scd some suffer more or less than others with apparently similar genetics. Why is it so unimaginable that the same could be true of trait?

I understand that the labs don't prove what is happening as clearly as in scd but shouldn't the patient be the one who is treated rather than treating a lab value? Maybe we have not discovered the test that gives an accurate picture of what the patient is experiencing. Why must we wait until ppl with trait die?, and then say oh 'it was sickle.' ' Look there are the sickled bodies in the organ the patient was complaining about! ''

After years of suffering I now have chronic pain and ongoing problems with my lower legs just like I have read about here for ppl with scd . I also have chronic blood in my urine and daily pain in my kidneys where I have sickled so much that I have permanent dilation of the renal pelvis and scarring. If only someone had told me that I could sickle and if I had those symptoms get fluids get antibiotics maybe I wouldn't be in as bad shape now. And when i finally realized for myself what was happening if someone would have listened sooner i may be in a better state of health Trait is not usually as bad as scd but if untreated the effects are just as bad based on what I know of my brother with the disease and based on what everyone here talks about. it's unnecessary pain and suffering bc of a culture of denial. Wasn't that part of the problem for ppl with scd when it was first realized in American hospitals? Weren't parents even accused of abusing their children bc so little was known and there wasn't universal testing? How can that sort of blind eye be allowed to continue?

Many ppl like me are asking questions and getting the party line that their symptoms must be something else. That is an inhumane injustice bc it delays proper intervention and prolongs suffering and increases long term damage. Please help.

[Caracois_2 in reply to Luvnuallways]

What are you saying its so true, but it is very difficult to prove, and it is inhumane injustice

[Bluebells]

Are you sure you have the sc trait or the disease?

[Nanahamu]

Why can't we introduce preventive measure that would reduce giving birth to a child with such trait? For preimplantation Genetic Diagnosis

[shankei]

More support is needed for adult sufferers, most literature and information is centered around children. Information needs to be out there, to give advise on how to support an adult at home, when in crisis.

Support is also needed in gaining and sustaining employment, financial issues, housing and utilities.

I am a 38 year old with SC disease and have difficulties sustaining work, due to prolonged periods of sickness. I am often housebound and isolated. My utility cost are high due to the need to keep warm and also feeling the cold more.

We are not eligible for social housing unless our current home impacts our health and due to the unpredictability/ fluctuations of this illness it is almost impossible to receive support from government departments.

[Luvnuallways]

Please address the latest data explaining why some with AS still have episodes similar to SS crisis