ST. PETERSBURG – It wouldn’t feel like the holiday season without the annual Sickle Cell Family Christmas Luncheon, this year held at the Enoch Davis Center, located at 1111 18th Ave. S.
Those diagnosed with sickle cell disease and their families were treated to an afternoon of music, inspirational messages and of course delicious food. The Sickle Cell Disease Association – St. Petersburg Chapter sponsored the event.
Sickle Cell Disease Association of America (SCDAA), St. Petersburg Chapter Board Member Melvin Smith was master of ceremonies and started it all off with a couple of jokes and a reminder of what the holiday season is truly all about.
“This time of year is the time we should be giving thanks and being with our family,” he said. Each SCDAA client was invited to the event and encouraged to bring guests to partake in the festivities.
More than two million Americans are estimated to have the sickle cell trait, with the Centers for Disease Control estimating some 100,000 Americans living with the actual disease. The condition, although present in Hispanic Americans and those from Mediterranean countries, occurs in about 1 in 12 African Americans.
SCDAA Board Member Milton Bailey gave the invocation and grace. He reminded those in attendance to not forget what they really are celebrating with the Christmas holiday.
“Our lives can never reflect what they truly ought to be,” said Bailey who acknowledges that the fast paced lives people live tend to leave Christ out. “Our lives would be so much richer if we could start our day off with meditation and prayer and asking for God’s guidance.”
A look back at 2014 may leave some with an unsavory taste in their mouths, especially those living with a chronic disease such as sickle cell. Times of ups and downs, difficulties and heartache, and even times when life appeared to be unfair, or the struggles and turmoil too much to bear, may have cropped up way too often. However, Bailey took a moment to inspire others to reassess their dreams for 2015 and to build a better relationship with God so that they may recognize their goal and have greater success, instead of struggling on their own.
“Sometimes we’re moving on our own time and our own will and God doesn’t have anything to do with that, and we wonder why we fail.”
Although the treatment of sickle cell has seen many improvements over the years, average life expectancy for those suffering from the disease is around 40-50 years of age. Extreme caution in preventing infections and activities that reduce oxygen in the blood must always be used, as well as, a good diet and regular health maintenance.
Registered Nurse Dawn Gross works as a sickle cell screening coordinator at All Children’s Hospital in St. Petersburg and enlisted the help of patients in sharing a couple of ways to stay healthy over the holiday season. Young Matthew told the families present to stay warm at all costs. Others mentioned simple preventatives like drinking plenty of water, eating healthy and taking all their medicine.
“All of our kids at All Children’s know this secret,” said Gross. “That is confirmation that we’re doing what we’re supposed to be doing.”
She directed families to check out the just released National Institute of Guidelines. At 160 pages, the document, which discusses changes in the standard of care patients with sickle cell receive, may not be an easy read, but it may prove helpful when conversing with doctors as to what types of tests and medicine would be most beneficial. It can be found on the web.
SCDAA St. Petersburg Chapter President and Founder Mary Muprh took a moment to thank all those in attendance and remind them of the next support meeting to take place January 27.
“We expect to see you,” she said explaining that coupons for additional gifts will be given out. “But you can only get them when you attend the meetings.”
Muprh also praised the over 100,000 signatures received in support of sickle cell research and equipment. The next step she said is to write your congressmen and demand they pass bills that will help the SCDAA reach their goal of obtaining 25 comprehensive centers with programs instituted around the nation and of course find a cure.
“If they can find a way to cure Ebola in 30 days, they can find a way to cure sickle cell,” Muprh said pointing out that sickle cell disease doesn’t receive the same amount of recognition and support that other diseases such as cancer and diabetes do.
After guests enjoyed the performances of Ms. Keke’s Dance Academy and the Southside Tabernacle Mime Dancers they sat down to a delicious chicken dinner. Santa’s helpers brought gifts to all the children associated with the SCDAA. Afterwards families were invited to have their pictures taken with Santa Claus.
Sickle cell is a disease that is passed down through families, in which the red blood cells take on a crescent shape, making it difficult for oxygen to be carried throughout the body. Symptoms can come and go throughout the years and include episodes of pain, infections, and bouts of anemia.
For more information on the disease, log onto sicklecelldisease.org, or check out the local chapter on facebook.com/SickleCellDiseaseAssociationStPetersburgChapter.
To reach Holly Kestenis, email hkestenis@theweeklychallenger.com
