Real Stories From People Living With Sickle Cell Disease: The Johnson Family — Rex M. Everett

Renal Medullary Carcinoma, also known as RMC, is a rare and aggressive form of kidney cancer. RMC is known to exclusively affect those of African origin who have sickle cell disease or other sickle hemoglobinopathies. Due to its aggressive nature, its early detection is vital. However, being such a rare disease, very little research and awareness exist.

Recently, I read an article titled “ Real Stories From People Living With Sickle Cell Disease: The Johnson Family” as well as saw a video, “Mothers Mission to Bring Awareness to Rare Kidney Cancer”. They both described RMC and how the Chris CJ Johnson Foundation aims to spread awareness around it. For around four decades I have been a steward for humanity in the healthcare sector and am of African origin. Thus, this cause and being on the board of the Chris CJ Johnson Foundation is of great honour to me.

Below are some insightful excerpts from the article and the video —

“When you lose your child, it’s real. It’s been 5 years for me. People will tell you time will heal, but it doesn’t really heal. You just learn how to cope,” said Ritchie Johnson on the loss of her son, Chris, to a rare kidney cancer linked to sickle cell trait (SCT).”

“At the age of 38 … Chris was diagnosed with an extremely rare form of kidney cancer known as renal medullary carcinoma (RMC).

“RMC has been linked to SCT. RMC is aggressive and typically leads to death. It’s especially difficult to treat because of limited awareness and research on the disease. There is no medicine available for RMC. At the time of Chris’ diagnosis in 2011, there were no clinical trials

“The cancer went through his body like wildfire,” said Ritchie. Chris passed away 3 months later in the fall of 2012.

“The CJ Johnson Foundation was formed in April, 2013. This is something Chris wanted to do…More and more patients have now been diagnosed with RMC than before.

“While Chris received treatment, he understood the need for awareness and information on kidney cancers, especially RMC and its link to SCT. The Foundation raises awareness and donates funds to advance RMC research, and it provides education and support to families battling RMC. Some progress has been made, including two clinical trials on RMC that help to better understand the condition. However, more awareness is needed.

“We’re not trying to scare anyone, but we want people to be aware of any possible symptoms that might be associated with RMC. Awareness is extremely important… We need to get this information out globally so that we can make a difference, and one day, hopefully, find a cure for RMC,” said Ritchie.

“The main thing is staying positive and not giving up. Even though my son was 39 years old when he passed, it’s still scary. People can reach out to us (the Foundation) for emotional support or whatever they need. They need someone to talk to during this time. Think positively and don’t give up. Stand strong and fight it,” said Ritchie.”

Read the original article here.

Watch the original video here.

--

--

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store
!mpact

!mpact Magazine is a platform where people with a vision can share their ideas and insights.