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Sickle Cell Disease-a quick update and recap!

At the end of 2009 I became aware of John Dada's tremendous determination to tackle the scourge of Sickle Cell Disease in rural Nigeria, where he attends the needs of a community numbering more than 100,000.

For those unfamiliar with this disease, it takes the form of an inherited blood disorder. It is incurable but, with good resources, can be successfully managed and controlled. Basically the condition affects red blood cells to the extent where they adopt a sickle shape - giving this nasty disease its name. The main implication is that these cells become stuck in small blood vessels, causing a blockage. This results in immense pain and swelling and, depending where this occurs in the body, can result in irreversible damage and even death.

Despite minimal resources, Fantsuam Foundation responded to this overwhelming need on its doorstep and set up a Sickle Cell Disease support group. This holds monthly meetings and now has more than 100 members, with attendances still rising. In order to accommodate these increasing numbers it now meets under the Mango tree at the Fish Farm as shown in the photo above.

At one of the weekly online meetings held between our UK and Nigeria teams, John mentioned his concern that he could offer patients only limited resources - ie one bed for overnight rest, IV dextrose, folic acid and panadol. By contrast, the UK boasts specialist clinics with consultants, paedriatric nurses and haematologists, to name but a few. Sufferers in the United Kingdom are routinely given prophylactic antibiotics, with medication such as analgesics readily available.

When UK patients suffer an acute attack, expert care is available including oxygen therapy, powerful analgesics and intravenous therapy. The specialist teams also have the resources, experience and training to treat any complications which result from the blockage.

John's vision is to narrow this vast discrepancy between the rural realities with which he is confronted on a daily basis and the specialist clinics of the Western 'developed' world.

There is a huge need for additional physical resources, including a larger clinic and treatment room. John continues to work hard to achieve this

In addition to requiring funds to buy medication, help is needed to provide suitable learning materials for staff, patients and their families.

We are very grateful that the Dadamac network also includs Dick Heller of Peoples-Uni (to learn more about the history of Peoples-uni and Dadamac click here!) and Dick offered us the structures at Peoples- Uni. Through the People's-Uni  we have successfully been able to find seven wonderful volunteers. Amongst this group we have Doctors from Kenya, Nigeria, Zambia and the Dominican Republic.

These volunteers are very much appreciated and their knowledge and experience is invaluable.

This is really exciting as, although I have a UK nursing background, I do not know the local realities of this disease in Africa. Thanks to the internet, I have easy access to vast amounts of information concerning Sickle Cell - but this too needs to be adapted in order to be made relevant and useful for those in resource-poor areas in Africa.

Happily, we now have in effect an expert advisory board consisting of doctors who have years of experience of treating and caring for these patients at grassroots level.

So far we have been able to take the step of introducing ourselves - although we are still learning which are the easiest ways for us to communicate with each other. We have further identified and agreed what topics should be covered by any future course (aimed initially for medical staff).

The next step is to find some resources for the Peoples-Uni experts to comment on - and for them to help adapt these resources to make them relevant for rural Africa. The plan being that if they work for rural Nigeria then they can successfully be replicated.

Together, with the help of John and Fantsuam Foundation and the Peoples-Uni volunteers, the hope is that we can continue to tackle this disease and bring much-needed comfort to both the sufferers and their families.