SICKLE CELL continued
What causes sickle cell disease (SCD)? SCD is inherited in the same way that people get the color of their eyes, skin, and hair. A person with SCD is born with it. People cannot catch SCD from being around a person who has it. It’s important to know your partner or spouse’s blood history, in order to gain clues on the possibility of having a child diagnosed with sickle cell.
How is sickle cell disease (SCD) treated? The goal of treating SCD is to relieve pain and to prevent infections, eye damage and strokes. There is no single best treatment due to the sickle cell type and a person’s symptoms. Treatments can be of a milder course such as blood transfusion, over-the-counter pain medications, increased fluid intake and/or intravenous fluids, to a more severe treatment such as taking a daily medicine called hydroxyurea. Given a person’s diagnosis, any and/or all of the above can be pain management options.
Is there a cure for sickle cell disease (SCD)? Currently, the only cure is bone marrow or stem cell transplant and these two procedures are extremely risky and can have serious side effects, including death. A fantastic point of hope on the horizon is the ground-breaking gene transfer therapy which, in the lab, has proven to stop sickle cell disease. This could mean the end of pain forever for all who live with this disease.
So, now that I’ve “dropped the knowledge” about sickle cell, imagine your child, family member or someone you love dearly, living with this painful disease. To see that person go through excruciating pain and know that there is no immediate remedy to stop it is heartbreaking to live through every time it happens. When you’ve experienced one pain crisis, you’ve experienced too many. Any parent caring for someone (youth or adult) living with sickle cell disease would agree. Because we never know when the next pain crisis will occur, it is important that we, the community, bring awareness to this often overlooked disease by doing two easy, yet
powerful actions: educating and communicating!
Because this is close to my heart and my family, I’ve learned to put my own personal issues aside like not wanting people to know ‘my business’ or “put myself out there by sharing my story”. Often we struggle with sharing our stories, and this is why Sickle Cell Disease, in my opinion, is not as well known as other ailments. Talking about this disease is the least I can do considering all the pain, blood drawn, hospital visits, and numerous other restrictions placed on my daughter’s life. Whether I’m asked to speak at an event, be interviewed by the media, present to a small group, write an article, meet with a new parent learning how to manage the disease, or engage in a one-on-one conversation at work, I will not miss the opportunity to bring awareness. It only takes reaching the heart of one person to change the course of sickle cell disease to advance the gene therapy transfer research.
Sickle cell disease may not have the large billboards, product ads, celebrity endorsements and radio ads that other conditions do, but word of mouth – through social media or old-fashioned talking – is still the most powerful advertising tool. Use it! Each one, teach one to bring awareness of sickle cell disease…The Moore family does! Communicate and educate to stop sickle cell disease! Are you with me? If so, please help bring awareness by posting a sickle cell message in support of sickle cell awareness month on you social media page(s) using the hashtag - #findasicklecellcure.
For more information about sickle cell, visit www.cdc.gov/sicklecell or sicklecelldisease.org
Sonya L. Moore is the Founder of ‘Nati Naturalistas, Join the ‘Nati Naturalistas natural hair society. www.meetup.com/nati-naturalistas / Email: [email protected] Follow us on Facebook, Twitter and Instagram to stay current on our events and other information.