Today we’d like to introduce you to Lisa Meatchem.
Hi Lisa, thanks for sharing your story with us. To start, maybe you can tell our readers some of your backstory.
I co-founded Sickle Cell Alliance Foundation in April 2014. We support families and patients living with sickle cell disease. Over the years we have given scholarships to students to continue their education beyond high school. Tristan Burnham was our first scholarship recipient. Today he serves as our Executive Director. We serve our community by participating in health fairs held around the city, visiting schools educating teens on the importance of knowing their status and the status of anyone they date in order to stop the Sickle Cycle. We have been interviewed by numerous local news and radio stations to spread sickle cell awareness and the need for support. We hold an annual awareness walk to raise money to continue our efforts to support the families. We work closely with Cincinnati Children’s hospital Sickle Cell clinic as well as University of Cincinnati Adult Sickle Cell clinic
Alright, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
It has been a struggle to find consistent funding and support to meet the needs of our community. Although Sickle Cell is the #1 hereditary disease, it is the least supported. Many people have told us that it is a black disease, or they believe that patients are drug seekers, which is not true. Patients with SCD receive morphine or dilaudid to combat the pain during a pain crisis as young as less than 1 year old. With proper care and monitoring, the disease can be controlled to an extent. After years of treatment, the body naturally begins to have a high pain tolerance. Patients do not like to take the medication for fear of addiction. It is insensitive to believe because a person has been taking pain medication their entire life, they would not know what works for them when dealing with a pain crisis.
It is hard for a parent with a child with sickle cell or an adult with sickle cell to maintain a job because the disease is so unpredictable. It is different in how it will manifest itself for each patient. Even the most stellar patients can be caught off gaurd by a pain crisis, stroke or any number of other symptoms of the disease.
Thanks – so what else should our readers know about your work and what you’re currently focused on?
I am a Sr. Casualty Claims Adjuster. I have worked in the insurance industry for 25 years. I founded SCAF because I have a daughter that is 23 years old with Sickle Cell SS Disease. When she turned 13 I realized none of the programs that were around when she was born were no longer available. There was nothing available to support patients and families. I truly had no idea what I was getting myself into, I just wanted support for my child and others like her. I have ran this organization over that last 11 years on a voluntary basis and all funds donated and raised have went directly to the patients and families. I am very proud that I have been able to help so many families. There are approximately 1000 documented patients in the Greater Cincinnati area living their life with this debilitating disease daily. It is imperative that they have support to help them continue to live.
What has been the most important lesson you’ve learned along your journey?
The battle may be hard and long but you got to keep going because people who have no support are depending on me.
Contact Info:
- Website: https://www.scafcincy.com
- Instagram: @scafcincy
- Facebook: Sickle Cell Alliance Foundation
- Twitter: scaf cincinnati
