The Gifty Foundation

The problem with Sickle Cell is that it’s a bit too complicated and most people don’t understand how it works. So here are a few basic facts from you might want to know.

[We’re not doctors or medical professionals. We recommend you seek professional medical advice if you think you may be affected by Sickle Cell. If you have any more suggestions to add to this list please let us know]

1. You can't “catch” Sickle Cell

Sickle Cell Disease (also known as Sickle Cell Disorder or Anaemia) is not contagious. Repeat, you can not catch it. It's passed down to a child from its parents genetically. 

2. Sickle Cell is NOT a terminal disease

Sickle Cell is very painful and serious disease which can cause a range of health issues and in some cases short life expectancy. In Nigeria 98% of children born with Sickle Cell Disease die before they’re 5 years old. However, when diagnosed early and with support, it's also a manageable condition. There’s no practical cure yet, but people with the disorder can live into their 50s, 60s and beyond when they manage their condition carefully. The point is, people with Sickle Cell should be hopeful and their families and friends shouldn’t consign them to an early death. 

3. People with Sickle Cell trait are usually perfectly healthy carriers

People who have the genetic trait also known as "AS", “AC” or one of the Thalassemia variant statuses, do not normally suffer any symptoms. There are some exceptions to this but it’s generally not a health issue if you carry the trait. People who have “full” Sickle Cell Disease, also referred to as SS or SC, will likely have significant health difficulties however. 

4. The Sickle Cell "trait" is extremely common in Ghana and other African countries.

Some statistics say that between 20-25% of all Ghanaians and Nigerians have either the Sickle Cell trait AS or AC. Most of us don’t know we have it because it’s normally harmless, so you’d never be able to guess without a proper test. Some of those tests don’t look for AC, so people should specifically ask for AS, AC and Thalassemia screening.  

5. If two parents who have the Sickle Cell “Trait” have a baby, it might be born with full Sickle Cell Disease

If a mother and father have one of the Sickle Cell traits, the future child is at significant risk of being born with "full" Sickle Cell Disease. There's a 1 in 4 chance this will happen. If you choose to take that risk, you should be prepared and speak to a doctor about treatment and testing of the child. Before having children, we recommend you ask a doctor or clinic to check your status and for them to provide genetic counselling if you carry the trait. 

6. Getting tested for Sickle Cell trait will NOT ruin your life.

If you have it, the trait doesn’t normally cause any health problems. Then you and your future partner can make informed decisions when it comes to making babies. Remember that if both parents are carriers, there is a 1 in 4 chance the baby will have full Sickle Cell Disease. There are other situations like when one parent has full ‘SS’ sickle cell and the other has ‘AS’. In those cases it’s always wise to talk to an informed, up to date doctor before having children. 

7. People with Sickle Cell are not sick all the time!

People with Sickle Cell Disease feel okay most of the time. When they have a ‘crisis’, that’s when the mis-shaped blood cells prevent enough oxygen getting around the body and the pain starts. At this stage, they often need to be admitted to hospital for treatment with pain killers, hydration and other treatments. 

8. People with Sickle Cell can live full, productive lives. 

Many successful Ghanaians in business, entertainment and government have Sickle Cell Disease. Yes, even though Sickle Cell Disease is a serious health problem, when it’s managed well, sufferers can live productive lives, have children and work. They deserve consideration from others when they’re sick, but they shouldn’t be discriminated against.

9. Don't wait, don't leave it too late, find out if you have the trait!

Relax, having the trait is NOT like finding out you have a disease because there are is no suffering and it's not contagious. You will be simply be able to make informed decisions about having kids with your future or current partner. Go to your doctor, clinic or ask someone you trust to suggest a testing facility near to home. 

10. Sickle Cell children can ONLY be born to parents who BOTH carry the trait

That's right, if a kid has Sickle Cell Disease, the kid’s parents both have the trait, or have Sickle Cell. There are no known exceptions, despite what some men might like to believe. 

11. There is no available cure for Sickle Cell Disease

There are medical treatments like Hydroxyurea but no practically available cure. Even though this is a such huge health, social and economic problem in Africa, the research and funding levels are astonishingly low. Maybe that’s because most of the people who have the condition can’t afford to pay for expensive treatments. 

12. Sickle Cell Stigma is wrong.

People with Sickle Cell Disease have a tough time, they deserve admiration and support. They didn’t catch it, it happened to them before they were born. We all have friends and family with Sickle Cell Disease, let’s treat them with the respect they deserve.

13. Sickle Cell is not a “curse”

It's a genetic disorder not a curse. It’s serious, but people who manage their Sickle Cell Disease can live long happy lives. If anyone tries to tell you something different, they don’t know what they’re talking about.

14. People with Sickle Cell are not immune to Malaria

People with the “AS” trait have more immunity than those without, but people with full Sickle Cell Disease have no immunity and are actually at greater risk.

15. Not only black people can have Sickle Cell

Sickle Cell is very common in Africa and amongst people of African descent. However, it's also prevalent in the Middle East, Asia, North and Latin America.

For a medical explanation of Sickle Cell, please check out this page from the UK’s NHS. 

If you have Sickle Cell and want advice on managing your condition, this page has some good advice. 

If you want to help us spread the word in Ghana, please come and join our Facebook Page. 

Thanks! 

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  Dear Friends,

Everyone has at least one special Gift don't they? Can you tell when someone's lying? Can you add up like Carol Vordeman? Can you name every manager in the Premiership? Are you so sexy you can raise the heart-rate of our (married) presenter by more than 5bpm? On Thursday October 31st we're hosting a groundbreaking new fundraising event for The Gifty Foundation called Gifted? It's not a charity quiz night, it's a full-on live gameshow spectacle with a mildly cheesy presenter, a pile of prizes (think Bullseye), trophies, and twelve teams of ten (you lot), battling it out after some free food and drink to become 2013's Most Gifted.  It's going to be an evening of fun, foolishness and great generosity. You'll be fed with incredible modern Ghanaian flavours courtesy renowned pop-up restaurant Zoe's Ghana Kitchen. You'll be looked after by our hosts and most importantly, you'll help us raise £20,000 we need to launch the first phase of The Gifty Foundation's sickle cell education and testing programme in Ghana next year.  TABLES / TEAMS OF TEN If you know 9 other people that would make a good team, make yourself Team Captain and buy a table now. Get your credit card out and buy a table (£1000 through Paypal), then get your friends to pay you back.

SMALLER GROUPS If you're a smaller group, or on your own, buy individual tickets (£100 each, Paypal)  and we'll match you up with some great team mates. 

DONATIONS If you can't come but would like to buy a ticket anyway, or if you want to buy a handful of tickets, please click here to make a specified donation through Paypal.  Whatever you do, don't leave it until the last minute to get your tickets, the auction event totally sold out in May and this will do too! Just reply to this email if you have any questions or you want to organise payment by another method.  Thank you! Tom, Jess, Kit, Muffin, Kwame, Helen, Joe & the whole Gifty Foundation team.  Click here to add the event to your iCal, Outlook or Google Calendar Check out the location on Google Maps

Dear Friends and Supporters,

You haven’t heard from us for a while, but we’ve been busy. Over a year has passed since we officially launched the Gifty Foundation at the Africa Centre in London so I felt it was about time we give you a little update on the work we’re doing. 

Over the course of the year we became a registered charity, established a board and then hired a research company in Ghana to run a series of focus groups across the country in order to gauge attitudes, awareness and knowledge of sickle cell. A few weeks ago, Helen Platt who coordinated the project for us, completed her report based on those interviews. The results are illuminating and concerning. There is scant knowledge and almost universal misunderstanding of how the condition works. Very few people know their genetic status meaning that some of them will have children with sickle cell without having been aware of the possibility. Given that this is arguably a bigger problem in Ghana than HIV, why sickle cell gets such low levels of attention and investment is still puzzling to me. 

One of the research insights was that those few people who knew about sickle cell and had tested to see if they carry the genetic trait, had done so because someone they trusted took the time to explain it to them. We're now embarking on a pilot project which involves making a short film with a series of well known, respected people from sport, entertainment, even politics, who will explain the issue and encouraging young people to take a simple test. When shown in classrooms or community centres, we're then giving them vouchers to take a free test. Counselling is then made available after testing for those who test positive for the trait. 

The aim is to measure the effectiveness of that approach, and to gauge what portion of people shown the film will take a test, and where they will choose to go for that test - clinic, pharmacy, community centre etc. 

Once the pilot is completed we hope the results will provide a business case for much greater investment from organisations like the World Heath Organisation, UN, the Ghanaian Government and corporate donors. We intend to roll out the programme regionally, then nationally, while simultaneously publishing our handbook for other organisations to use in their own countries. We’re going to ‘open source’ the results. 

In other good news, we're having a fundraising event later in the year in London, and we’re aiming to use that money to make the film and do the pilot in December or January. The event is in the planning stages and already looking like a lot of fun, so stay tuned for an invite soon. 

I wanted to firstly thank you for your support and secondly ask that you keep supporting us. For the next year every penny counts and we’re grateful for anything you can give through the donate button on the right. 

Many thanks,