Sickle Cell Anemia is an inherited blood disorder, which mainly affects people of Afro-Caribbean origin, and some people from the Mediterranean region, Arabia and Asia. It's estimated that there are some 12,000 people with the condition in the UK - of which 1 in 4 are West African, 1 in 10 are Afro-Caribbean, 1 in 50 are Asian and 1 in 100 are Northern Greek. The aim and mission is to raise awareness of the condition and encourage Black and Asian communities to get screened.

What causes sickle cell anemia?

Within our blood vessels are red blood cells (which are shaped like doughnuts). These red blood cells contain a protein called hemoglobin (HbA). The function of hemoglobin is to carry oxygen from the lungs to all parts of our body.
Sickle Cell Anemia occurs when the Hba is replaced by sickle hemoglobin. When you have sickle hemoglobin, your red blood cells become sickle-shaped, therefore, they cannot pass through very small blood vessels. This causes blockage, resulting in lack of oxygen to parts of the body, which in turn results in pain, and/or damage to vital organs.

How does a person get sickle cell disease?

Sickle Cell Anemia is not 'catching'. We all have two copies of the gene for HbA, one inherited from our mother and one inherited from our father. Now, if one parent carries the HbS gene then sickle cell trait can occur in their baby. This means that the child is a carrier of the sickle cell gene, but has enough HbA to keep their red blood cells flexible. So the child will not have the symptoms of Sickle Cell Anemia. Very occasionally they have to be careful when doing things that demand less oxygen than normal, for example scuba diving. If both parents carry the trait then the child may be born with the full Sickle Cell Disease with the symptoms as described below.
There are other types of hemoglobin such as HbC and beta thalassaemia, that when combined with sickle hemoglobin cause sickling disorders. Consequently, there are different forms of Sickle Cell Disorder, which occur in different ethnic groups.

The symptoms of sickle cell disease.

Symptoms include fatigue, breathlessness, bone and joint pain, weakness and susceptibility to infections. People affected with Sickle Cell Anemia also experience what's known as 'crisis'. These are severe attacks, which can encompass the aforementioned symptoms as well as jaundice, fever and vomiting. A crisis usually leads to hospitalization, and in some cases a blood transfusion is needed. Repeated crisis can lead to liver, lung, kidney damage and other medical conditions.

Managing sickle cell disease and anemia.

There is no cure for the disease but daily medication and regular hospital check-ups keep Sickle Cell Anemia manageable. People with the condition are able to go to school, college or work but, of course, may have to take time off for periods of illness. Like with many other conditions, it's a matter of being aware of the 'limitations' of the disease and taking precautions. So, for instance, avoiding strenuous and emotional stress, drinking plenty of fluids to avoid dehydration and being able to recognize the onset of illness is important.

Our Mission: To help children with sickle cell focus more on life not pain, and to heighten awareness as it relates to sickle cell disease while bringing our sickle cell communities together.

On Wednesday March 10th the Quest to Cure Family lost a very special friend. Mr. Michael Miguel was an adult family member who suffered from sickle cell disease. He was also a financial sponsor, a youth mentor and a big brother to many in the sickle cell community. He spoke of a healthy lifestyle, which included healthy eating, exercising, as well as how to cope with pain in a crisis situation. Our friend’s un-timely senseless passing is a prime example of why an organization created to promote statewide quality of care and education surrounding the effects of sickle cell disease is needed. Mr. Miguel attended the Quest to Cure Adult Support Group and Annual Events. Our fondest memory of him is when he showed up at the Quest to Cure Community Haunted House in October 2009, dressed in a bell-bottom white leisure suite and a 10 gallon nappy black afro wig. He looked like a cross between a skinny black Elvis Presley, and Supa Fly. Even though he was one of the only adults in a costume at the event, he stayed in character all night. Michael and his family tried to participate and support every event Quest to Cure offered. The Life Without Pain 5K Walk a Thon, Family Night out at the State Fair, The Adult Support Groups, etc….. He did his best to show his support. Every time we saw Mike, he was smiling, speaking words of wisdom or encouragement, or saying something funny to get the crowd laughing and smiling with him. One funny thing Mike said that we remember is when he was poking fun at the Executive Director of Quest to Cure “Kristine Buchanan”. He made fun and laughed at her crazy childhood fear of state fair slides. She told the story of her not being able to slide down the massive slide without flipping over and rolling down instead of sliding down. Mike made the crowd she was telling the story to visualize her face and what she must have been thinking and saying as she tumbled down the slide. We all laughed until our stomachs hurt and tears fell from our eyes…….. Mike, we will miss you, and thoughts of you will be in our hearts forever because you truly have left your fingerprint on our lives. May God Be With You The Quest to Cure Family,

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Quest to Cure Road Camp

Ask us how you can help support next years 2009 Summer Road Camp. One of the most exciting events for our kids to focus on life and not pain. info@questtocure.org




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The Exec's Corner
WORDS FORM THE HEART

History will have to record that the greatest tragedy of this period of social transition was not the strident clamor of the bad people, but the appalling silence of the good people.

Thank you,
EXEC

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