Most persons love the relatively cool temperatures during the Yuletide season, but for persons with sickle cell, having to deal with the cold is one of the worst parts of Christmas.
“For Christmas, persons normally get more painful crisis, because the time gets colder, so for that reason, sometimes we do like a sweater drive so they can feel more comfortable,” said medical social worker at the Sickle Cell Unit, Alphonso Blake.
One in every 150 Jamaicans either has full-blown sickle cell or the trait. A crisis is a painful episode that begins suddenly and can last from several hours to several days.
Each year, the Sickle Cell Unit partners with the Shak’s Hope Foundation to host a treat for those diagnosed with the genetic disease or have the trait. The foundation was founded by Miss Jamaica Universe 2011, Shakira Martin, who died from complications associated with the disease in 2016.
Martin’s mother and executive director of Shak’s Hope, Andrea Hall, said her daughter started the foundation as a means of lifting spirits and bringing awareness to those living with sickle cell.
“Because sickle cell is invisible, it is very hard for people to understand what they go through,” she said.
Shak’s Hope supports persons in both Jamaica and South Florida. Normally, the group would treat persons during the Easter holiday in Black River, St Elizabeth; and Montego Bay, St James, but they decided to host the treat for Christmas instead. Toys, care packages, toiletries and clothing were distributed yesterday to persons with sickle cell.
Five-year-old Madison Lee was all smiles as she looked at the range of toys and books available. In the end, she chose a doll and her mother Alicia McKenzie selected a book about Christmas lights.
‘I love the presents’
“I love the presents,” she beamed as she clung to her doll.
Madison has been admitted at the hospital several times already as a result of the sickle-cell disease. Her parents both have the trait. At first, her mother said dealing with the condition was overwhelming, but she has been gradually learning how to deal with her condition.
“She loves the cold, so what I do is ensure that she drinks a lot of water. Water is her best friend, and as long as her blood is flowing and it is not sticky, then she is well,” she said.
At this time of the year, sickle cell patient Mishcah Hamilton knows that she has to take her medication, apply rubs for pain relief, stay hydrated and pray, because she generally has more painful experiences. The 27-year-old currently has to walk with a crutch because her hip is broken. She has been diagnosed with avascular necrosis, which is fairly common in mostly older persons with sickle-cell disease.
“Sometimes, I can feel like the bone rubbing against each other and sometimes the pain goes to my lower back. Sometimes, I even have sleepless nights,” she said.
Hamilton started pursuing a first degree in mass communication at the Northern Caribbean University in 2016, but she had to put her studies on pause due to her illness. She has since established a GoFund Me page to help raise money to do hip replacement surgery.
Hall recalls Martin breaking her hips towards the end of her reign as Miss Jamaica Universe.
“The bones just started to disintegrate one day while she was at the beach sitting down,” she said.
“It is beautiful this time of year to us, but to them, if they go into water that is cold, even the beach or the pool or anything, sometimes staying in there too long causes dehydration,” she explained.
Hall hopes to do a sweater and blanket drive, because there are always requests from sickle cell patients for these to help shield them from the cold.