American Red Cross Presents Coffee & Conversation
“Purposed by Pain”: How Lydia Langford is Sharing Her Story to Encourage Others
The American Red Cross recently presented “Coffee & Conversation,” an IG Live discussion focused on sickle cell disease and the impact community and faith-based partners can make by hosting blood drives in diverse communities. Hosted by Rashan Ali, the panel featured sickle cell warrior Lydia Langford, Mrs. Serita Jakes of The Potter’s House of Dallas and United MegaCare, Inc. and Red Cross medical director Dr. Yvette Miller.
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Sickle cell warrior Lydia Langford was diagnosed at two months old with sickle cell type Hemoglobin SS, the most common and most severe type of sickle cell disease and experienced her first pain crisis while a freshman in college. Over time, she’s received more than 600 critical blood transfusion s as a result of her illness. During one of those transfusions, Lydia suffered a hemolytic transfusion reaction, a severe complication where the red blood cells she received during transfusion began to be destroyed and rejected by her immune system. This is why she knows first-hand the critical importance of receiving a closely matched blood donation from someone of the same race or similar ethnic background.
Sickle cell disease is the most commonly inherited blood disorder in this country, and it is estimated that over 100,000 people in the U.S. – the majority of whom are of African descent – have sickle cell disease and may require blood transfusions throughout their lifetime to help manage their disease. That’s right, those who are of African descent or Black are disproportionately affected by this disease.
Sickle cell disease distorts soft and round red blood cells and turns them hard and crescent shaped (like a sickle, a farming tool for which the disease became named). The sickled cells can clump together, blocking blood vessels and preventing tissues from getting oxygen which causes extreme pain and life-threatening complications like anemia and stroke. When blood has a hard time traveling through the blocked areas, any trauma or mild and extreme exposure to the body can bring on a sickle cell crisis.
While recovering from a recent sickle cell crisis in which she received 12 units of lifesaving blood, Lydia joined the IG Live event from her hospital bed – a true testament to her warrior princess spirit. Two of the things that help her maintain her strength and spirit are her connection to her late grandmother, and her faith in a higher power.
“My grandmother, my Nanny, she’s not here with me anymore, but she knew all about sickle cell because she was a nurse,” said Lydia. “So, she switched from the ER to the hematology/oncology unit so she could learn as much about sickle cell as she could, and so that she could teach me when the time came. She did a fantastic job with that.”
Because of her faith, Lydia has a beautiful ritual of taking time to pray for her donors after each transfusion, even though she doesn’t know exactly who they are.
“I may never meet that person and be able to thank and hug them and tell them that they saved my life, but I can thank their creator,” said Lydia. “I want to express my gratitude for them.”
Although Lydia’s condition often leaves her in what she describes as “torturous, agonizing, indescribable, unimaginable” pain, she also makes sure to live her life to the fullest when she is able, which includes: spending time with family, enjoying activities like skydiving, rock climbing, and expressing her musical talent on the piano and flute.
Lydia says she’s been “purposed by pain” to share her story and encourage others. Following a life altering sickle cell crisis in 2013, the “sickle cell warrior princess” began chronicling her journey via social media to promote awareness around the disease. “This is my life,” said Lydia., “This is my disease and I’m gonna proudly show it. I’m gonna tell my story no matter where I am (because) if by sharing my story I’m able to encourage one person, then I feel like this all isn’t in vain.”
Building Trust and Awareness
Beyond a historically-based mistrust of the medical community, there are also some common hesitations and misconceptions in the Black community around the idea of giving blood, including that people with high blood pressure or diabetes are ineligible. Dr. Miller dispelled those myths, sharing that as long as a potential donor has their illness controlled with medications and feels healthy and well, they may still be able to give. African Americans and those of African descent have unique antigens within their red blood cells that are extremely effective in the recovery process for sickle cell patients. Therefore, it’s important for the Red Cross to form community partnerships within the Black community to build trust and work together to increase the number of blood donors who are Black.
Mrs. Serita A. Jakes, executive director of The Potter’s House Women’s Ministries joined the panel to discuss how The Potter’s House and United MegaCare, Inc. are partnering with the Red Cross to help save lives through fire safety, disaster response and hosting blood drives to support patients with sickle cell disease. Mrs. Jakes believes in looking out for one another as a community.
“I’m so delighted to join with Dr. Miller and the American Red Cross,” said Mrs. Jakes. “All of our campuses are joining in [Lydia’s] fight. There will be people there for [her] and people who carry the [sickle cell] trait. We just want to be able to join hands and link arms with [sickle cell warriors] to rally and see what we can do to address sickle cell disease.”
In addition to hosting blood drives at its three campuses in Dallas and Fort Worth May 21, The Potter’s House-United MegaCare is also hosting blood drives at its Denver and L.A. campuses in June. In honor of Juneteenth and World Sickle Cell Day, they’re partnering with the Red Cross to help install free smoke alarms in Lancaster, TX as part of the Sound the Alarm campaign and putting together 2,000 comfort kits to support disaster response during their Community Impact Day on June 18.
The Potter’s House is a non-denominational, multi-cultural church founded and led by Bishop T.D. Jakes. In conjunction with United MegaCare, Inc., a global humanitarian organization also founded by Bishop Jakes, with a health and wellness focus, the church will be opening the doors of all three of its campuses to host blood drives to support patients with sickle cell disease and to help raise awareness about the challenges patients face while battling the chronic condition.
The following blood drives are taking place Saturday, May 21 from 9 a.m. to 3 p.m.:
-The Potter’s House of Dallas, 6777 West Kiest, Dallas, TX 75236
-The Potter’s House of Fort Worth, 1200 Woodhaven Blvd., Fort Worth, TX 76112
-The Potter’s House of North Dallas, 10501 Main Street, Frisco, TX 75035
Eligible donors are encouraged to schedule an appointment to give by visiting RedCrossBlood.org and entering sponsor code UnitedMegaCareSickleCell or entering in their zip code to find their nearest blood drive opportunity.
Of her hopes for the future of sickle cell, Lydia said, “Ultimately, what I want is a cure for sickle cell not just for myself, but for the other 999,000 people suffering with the disease. It’s my passion to speak about this disease and promote as much awareness as I can so that we can get a cure and end the suffering for me and so many others.”
Blood donations remain essential to the health of communities. Individuals of all blood types are encouraged to make an appointment now by using the Red Cross Blood Donor App, visiting RedCrossBlood.org/OurBlood or calling 1-800-RED CROSS (1-800-733-2767).
