There is no other way of preventing Sickle Cell disease than making blood test before marriage as it is a genetic health condition; being aware of your partner health condition is determinant in preventing the disease.
Speaking about the preventive methods, Ms Margaretha Van Mourik, a genetic counsellor, revealed that there were two other ways of decreasing the chance of an affected foetus:
The couple can opt for assisted reproduction (pre-implantation diagnosis, egg donation and artificial insemination). The high-risk parents can also make unusual choices such as adoption, no children or separation.
Ms Margaretha Van Mourik also raised awareness on sickle cell complications and treatment options. She said that many complications could occur and it is important to be responsive to them. It is thus vital to educate people on what the disease really is and how to react in front of the different crisis.
Crisis can be anything from pain, breathing problem, extreme tiredness, headaches or dizziness to name a few. On how to promptly deal with a crisis, Christine Membi- the Project Manager of the Hope Project Scotland said:
“Look for a painkiller and be rehydrated. Have a lot of water and if you have a temperature, go to the hospital straight away because you may be developing an infection or something worse.”
Mr Membi also noted the importance of being aware of the disease: “The world sickle cell day was celebrated on June 19. So, rather than just drinking and dancing, each year, we bring people together to understand the meaning of sickle cell and how it affects us.”
Sickle cell is found more frequently in persons of Middle Eastern, Indian, Mediterranean and African heritage because those geographic regions are most prone to malaria.
Hence, the gene variant for sickle cell disease affects more Black people, but it has nothing to see with the skin colour, “it can occur in any population,” Ms Linda Alexander from Children Health Scotland revealed.
During Saturday’s conference, some families shared their experiences with the sickle cell disease through a documentary film.
Sickle cell disease is a group of disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. People with this disorder have atypical hemoglobin molecules called hemoglobin S, which can distort red blood cells into a sickle, or crescent, shape.
During the conference, people also learnt about broader support and information from other organisations.
Donna Tomlin from Contact a Family, for instance, mentioned the importance of getting “the right information at the right time.” Ms Tomlin provided details on the social, medical, educational and financial support they offer to disabled children’s families in the UK.
She also mentioned other supports such as the Independent Living Fund and the Personal Independence Payments.
Selena Begley from Family Fund was one of the speakers at the sickle cell awareness event, and she noted that everyone should know their right and entitlements.
Ms Begley also advised people to take part in the consultation: “Scottish Government constantly has consultations on supporting families with disabled children and young people across Scotland… Consultations are opened now until the end of September,” she said.
It was stated during the conference that “It costs three times more to raise a disabled child than a non-disabled child. 620,000 parents in the UK care for disabled children, and they all need support.”
The Hope Project Scotland aim through that event was also to make sure sicklers and families are aware of the support available to them.