How to Help those Affected by Sickle Cell Disease
As we travel throughout the United States and abroad, speaking and educating others about sickle cell disease, the most frequent question we get from those that do not have sickle cell disease is, how can we help? Even when I’m in pain, sometimes, my husband is at odds with himself, wanting to help wanting to hold me, but knowing that touching me is going to send me screaming in agony. However, have no fear, there is so much that you can do, and here is a short list to get you started.
1. Volunteer: Those affected by sickle cell disease often do not have the energy to accomplish advocacy initiatives because of the chronic anemia and fatigue that we face. So having a willing person, who is able to help us manage, organize, plan, and assist with the advocacy events, group, drive, fundraising, camp, or study is a great help.
2. Emotionally and physically support the persons you know affected by sickle cell disease. There is so much you can do just by providing a non-judgmental shoulder to lean on, cry on, and vent with. This extends to the parents, siblings, caregivers, and partners who are warriors in this fight. Even offering to babysit for a parent that has a child in the hospital, giving someone a ride, going job hunting, or offering to pick up groceries are small things that go a long way. In crisis, you can adjust the room temperature, encourage more water/fluids, offer a heating pad, call the doctor on our behalf, get our prescriptions from the doctor, adjust the pillows, run a bath, distract us if you can (yes, I have laughed at hubby’s jokes in a full crisis), and raise hell at the hospital on our behalf if need be.
3. Call the Red Cross and donate blood. We often require frequent blood transfusions throughout the year, placing a significant burden on an overloaded blood donation system. Every time I see someone has donated blood, I go up to them just to say thank you, because their donation may save my life.
4. Sign up for the Bone Marrow Registry. Unfortunately, this is the only known cure for sickle cell disease at this time. Minorities are the ones most affected by sickle cell disease, yet have the least amount of matches and donations in the registry. If we wanted to ‘get cured’ this is the only route available at this time, and those without sibling donors or familial donors may have to use the National Bone Marrow Registry. You may never get called up as a match, but just signing up can make an impact. Learn more HERE.
5. Educate yourself, so you can educate others. Even though you are not affected by sickle cell disease, it’s important to get tested, and encourage others to get tested. The only way we can prevent this disease from passing on to the next generation is through aggressive education and awareness strategies. There are still so many myths about sickle cell disease that are in our society today. For example, white people don’t get sickle cell–FALSE! People with the trait don’t have sickle cell crisis —FALSE. It’s up to all of us to stamp out the ignorance, fallacies and miseducation that exists.
6. Donate, donate, DONATE! I cannot stress this enough. One thing I’ve learned through advocacy work is that those in this field know how to make a dollar stretch very far. Your money will not go to waste and will be put directly into education, research, empowerment, awareness, and other initiatives. There is so much that needs to be done with sickle cell disease. Even though this condition has been around for over 100 years, it’s still a relatively fringe condition, with very little known about it. So there is so much room for advocacy, and so much that needs to be done. Money makes things happen, and most advocacy organizations fail because they do not have enough finances to sustain their endeavors. Speaking of which…help us out:)
7. Be there. Sometimes, just showing up and being there is enough. I still remember my last hospitalization. I my dear friend Vanessa come every single day, and I eagerly anticipated her visit. It encouraged me, and gave me something to look forward to. If you can’t be there in person, call us, write us, pray for us. Every day we are on the brink of death. The only thing that keeps us on this side is the grace of God and the prayers of those we love. So please, don’t let go of us. We need you in this fight more than ever.
What other tips and advice do you have warriors?
