Cayenne Wellness Center recently sponsored the 15th Annual Sickle Cell Disease Educational Summit to share the latest developments in SCD research, treatment and advocacy.
The four-day symposium brought together families, healthcare providers and pharmaceutical company officials to inform and educate each other along with building community and trust between all parties. Event co-sponsors and collaborators included Axis Advocacy, Bluebird Bio, Emmaus Life Sciences, and Just Muv Consulting.
Adrienne Shapiro, a fourth generation SCD patient, attended the summit to learn more about ways to give back through her family’s company, Axis Advocacy. André Marcel Harris, a student from Houston, Texas, said he learned the history of the disease and all about SCD pioneers.
Citing insight that she became aware of at the summit, Yvette Davis of Carson said, “I learned self- care through breathing techniques and how music and the sound of the ocean drum helps heal the nervous system, improve brain function and supports the circulation system.”
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Carson added that she also discovered that “body tapping helps wake up the lymphatic system and provides relief from pain” and that sweeping motions on the body can reduce “negative energy and relieve tension and trauma stored in the body.”
Misty Williams, a 40-year-old sickle cell warrior and founder of the Misty Melony Sickle Cell Disease Foundation, stressed the importance of health professionals taking seriously the issues endured by sickle cell patients.
Describing the situation as a “crisis going on in the medical community,” Williams said, “We are seeing more and more patients pass away due to the mistreatment in hospitals towards our sickle cell patients by the medical staff, who are telling patients that they are not in pain or not willing to treat patients or withholding ordered pain medication as a patient suffer!”
Williams said these actions add to the “mental suffering” of a patient, makes them reluctant to seek care and instead “try to get through it at home. Some of these patients are alone, whether living far from their family, or don’t have that family support.”
While acknowledging many healthcare workers may not be knowledgeable about SCD, Williams urged medical staff to classes and seminars to get educated about the sickle cell.
“I personally asked the community to pray for our medical staff to be guided, to ask questions if they’re not sure, to take the extra step to learn more about this disease, recognize that each patient is different, and to continue to give strength to our medical staff and to our SCD warriors,” she added.
To learn more, visit cayennewellness.org or call (818) 940-0079.
