Minister Gwen Smith lives with sickle cell disorder. *Photo supplied
Minister Gwen Smith lives with sickle cell disorder. *Photo supplied
Gwen Smith is a substitute para-professional, former special ed student educator and licenced minister in The United Holy Church of Bermuda Inc. She serves there as public relations officer and head of the Christian education department, and is an administrative assistant at her local, Greater St. George’s Holy Church. Minister Gwen is the wife of Pastor Grant Smith.

Within this hectic schedule, the minister also lives with sickle cell disorder, which involves severe pain in the joints, bones and chest and sometimes requires hospitalization for blood transfusions, intravenous fluids and oxygen. These painful episodes are called ‘sickle cell crises.’ Once she has recovered from one, Gwen resumes her hectic lifestyle with a bottle of water, pain medication and warnings from her doctors and husband that she needs to rest more.

Gwen has lived with this disorder all her life, but due to the lack of technology and equipment when she was an infant, her symptoms were misdiagnosed for rheumatism. Now, technology has improved, and a baby can be tested to determine if they have the disease or sickle cell trait.

Sickle cell disease is an inherited change in the red blood cells, which have a component called haemoglobin. Haemoglobin carries oxygen to all the cells and tissues in the body. People with sickle cell anaemia have a type of abnormal haemoglobin called haemoglobin S; normal haemoglobin is called haemoglobin A.

The abnormal red cells are sickle shaped. They become stuck in the small blood vessels, causing a blockage which deprives the body of blood and oxygen and leads to painful crisis. The sickle cell trait is the harmless carrier state for the abnormal sickle haemoglobin (HbS) gene, which is inherited when only one parent has the sickle cell trait.

Although sickle cell anaemia is found largely among the black population, it also affects populations in the Americas, Greece, Italy, Turkey and Saudi Arabia, along with our own Portuguese population.

There was an increase in Bermuda during the 1990s. It paralleled the increase in the integration of people, especially among the young.

At that time, Minister Gwen visited the middle schools to educate the youth about the disease.

She advised them that if they were going to be sexually active to first get tested for sickle cell and urged them to use ‘precautions’.

Having a child with sickle cell is not easy, especially if you are young. It requires great sacrifices, which many are not prepared for — particularly for the interruption of a lifestyle.

Minister Gwen is grateful to her late mother for her dedication and sacrifice in ensuring that Gwen led as normal a life as possible, not only for herself, but also for her younger sister.

The minister’s mother was a woman of faith and prayer. She saw to it that Gwen received the best medical treatment, but also taught her to trust in God. She encouraged her to achieve her goals in life.

Gwen had and still has a wonderful support system — primary teachers who came to her house, high school friends who carried her books and a devoted husband of 28 years.

Thanks to the drug hydroxy-urea, which she has been taking since the mid-1990s, she doesn’t have as many crises today.

She has gone from nine or 10 to one or two crises a year. She sometimes has to remind her husband she needs a break, and likewise, he reminds her to rest and not take on too many responsibilities.

That makes Gwen feel well, and normal. She enjoys a ‘plain old tired’ feeling, instead of being racked with pain as soon as her body gets active. She is grateful to God for the wisdom he gives her doctors, along with the peace of mind that only He can give.

The Sickle Cell Support Group has been very encouraging to her, and to the many others who live with this disorder, by educating and meeting their medical, academic and emotional needs.

Minister Gwen tries to encourage parents to be more positive and less fearful about sickle cell.

She said:  “Educate yourself to empower yourself and let your child live! Modify his or her activities when they go through a painful season. And remember, it is just a season. Like the weather, spring will come again.”