HOPE FOR CHANGE: Charity raises awareness of 'invisible illness' thalassaemia disorder
IT’S OFTEN known as the ‘invisible illness’ where a person appears fine one day, but is struck down in excruciating pain the next.
This is the life of someone who suffers from sickle cell or thalassaemia disorder.
The unpredictable nature of this hereditary disease only adds to the difficulties ‘sicklers’ have to face as they battle to lead as normal a life as possible.
And this is where an organisation like OSCAR Birmingham comes in – a charity that has been working away quietly behind the scenes since 1974, educating and supporting those affected by this life-limiting condition.
It’s generally known as a condition which can affect one in four West Africans and one in 10 African Caribbeans. But more research has revealed it can also affect people of other ethnicities, such as Italians and Irish, Cypriots and Ethiopians.
Madge Milligan-Green, CEO of OSCAR Birmingham is determined to heighten awareness of the condition.
“One woman told me the pain she experienced was like someone smashing a hammer down on the back of her hand. That was how she described it,” Milligan-Green, from the charity’s small base in Birmingham’s Jewellery Quarter.
She has been in the top post for the past 10 months and is determined to raise OSCAR’s profile, while trying to raise funds in an increasingly harsh economic climate. She calls OSCAR ‘a big small’ organisation which has more than 200 clients on its books.
Milligan-Green explains further: “The pain people suffer can be excruciating – they call it ‘the crisis’. It can come on suddenly and put someone out of action for three weeks or more.
This leads to social isolation and sometimes disbelief from work colleagues who think ‘well they were fine yesterday’. Many simply suffer in silence and accept there is no cure. The African and Caribbean community have lived with the condition for many years. However there is some very encouraging stem cell research being done in Chicago where 11 out of 17 patients have been cured.”
The CEO of OSCAR notes that the pain is caused by misshapen blood cells which develop a ‘sickle’ shape, making it more difficult to move around the body. Depending on the severity of the condition which varies greatly, people can suffer a variety of health problems, from liver and kidney conditions, to diabetes, jaundice and joint problems. Youngsters can be more prone to mini strokes. Carriers of the trait have a one in four chance of passing it on to any children they may have.
The charity has strong links with Birmingham Children’s Hospital and holds weekly drop-in sessions, a befriending service, and also workshops on diet, juicing as well as advice on massage for pain management. But all this costs money.
Milligan-Green adds: “We are part of localgiving.com, which offers a range of match funding options, for example, if people sign up to donate regularly.
“We’re setting ourselves a target of raising £100,000. It sounds a huge amount but this could be achieved by 10,000 people donating just £10 each.”
It’s clear Milligan-Green - whose small team includes her personal assistant Doreen Warner and Leon Small, a client support worker - is determined to both fundraise and improve awareness.
She has masterminded an ‘Oscarthon’ run or walk around Handsworth Park next year (June 19th – World Sickle Cell Awareness Day), along with other awareness raising and fun activities during that week.
As a charity running for almost 40 years, OSCAR is proving to be one of the great survivors. For more details visit: www.oscarbirmingham. org.uk.