Sickle Cell Disease- Bringing Awareness
Constant pain, frequent hospitalization, and social anxiety. These are but a few of the things that people living with Sickle Cell Disease go through. September is Sickle Cell Awareness month, and I wanted to have my good friend educate us on exactly what she goes through, and what we as a community can do! My Natural Me caught up with Tiffany for an interview.
Check it out below!
MNM: What is Sickle Cell Disease?
Tiffany: Sickle Cell Disease is a hereditary blood disorder. It can cause other serious health problems such as: lung/breathing problems, strokes, epilepsy, skin wounds/ulcers and bone deformities. All of that come from a lack of oxygen from red blood cells. The life span of healthy red blood cells is 90-120 days, whereas the life span of sickled red blood cells is 10-20 days. Within the blood stream, sickled shaped cells can stick or jam on top of the healthy red blood cells, which cause extreme pain crisis. Just think of it as a log jammed in your blood stream.
MNM: What are some of the challenges?
Tiffany: The challenges have been numerous throughout my life. I had pneumonia twice (which in our case is called a sickle cell chest syndrome), 5 major surgeries, 2 miscarriages, both hips replaced and feet ulcers for 3 years. With those feet ulcers, I went to the wound clinic 3 times weekly to get cleaned and my legs wrapped up in 3 layers of wrappings up to my knee and was also put in a hyperbaric chamber for my wounds to heal faster. I'm also a thyroid cancer survivor. I'm always on maintenance medications, not only for the sickle cell but for pulmonary and kidney disease. All in all, I take 15 medications. I'm on oxygen everyday too. All that I listed takes its toll on me mentally. Having to remember to take my medications but yet I'm still a young woman of only 44 years of age!
I go to the Sickle Cell Infusion Center (our own ER that deals with "sicklers"), at least 4-5 times this year, so far.
MNM: How has this impacted you socially?
Tiffany: Socially, it has a great impact on me. I can't walk very long distances without losing breath, so my friends drop me off at the door or park in handicap spaces. Most of the time, I feel like a burden. My family and friends make extra strides for me to be comfortable. One day I could be well and can go out whereas the next day, I'm sick and have to stay home. That wreaks havoc on my social life. No one likes to feel "different".
MNM: What do you want people to know about this illness?
Tiffany: People should know that this is a very serious, painful illness that shouldn't be taken lightly! We are NOT drug addicts!
There are 5 main facts I feel are informative for people in general to know.
Pain which is severe and unpredictable require high doses of narcotics.
Our life span can go into adulthood.
Sickle Cell Trait is NOT a disease. It's an asymptomatic carrier state.
If both parents have the trait, there's a 1 in 4 chance of having a baby with the disease.
1 out of 13 African-Americans have sickle cell trait and many don't even know.
4. Sickle Cell Disease is found in various races such as: India, South and Central America, Saudi Arabia, Caribbean Islands and Mediterranean countries, NOT just African-Americans.
5. For a cure, not all Sicklers are eligible for stem cell transplant. There are associated risks involved. For more information on stem cell and bone marrow transplants, go to www.curesicklecell.org.
I would also like for the local news and radio stations to show support by talking about it and to sponsor our events. Annually, we have the Sickle Cell Walk-A-Thon in September. In various cities around the United States, the S.C.D.A.A (Sickle Cell Disease Association of America), has a 4 day Sickle Cell convention that's open to the public. If people want to find out if they or their children has the disease or the trait, to GET TESTED! Just one simple blood test can tell your entire fate in life! Last but not least, for more information about this painful illness and various events, the main website is www.sicklecelldisease.org.
Do you or a loved one battling Sickle Cell? Let’s hear about it! Tell us below ways you are coping with this disease!
