Did you know that you are at risk of developing a rare form of kidney cancer if you have the sickle cell trait? Neither did we, until my younger brother was diagnosed with renal medullary carcinoma in 2012. This cancer is extremely devastating with a very poor outcome. Please visit my website for more information at rmcsupport.org
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If you know anyone with sickle cell trait, please urge them to have their kidney's screened (ultrasound) on a yearly basis.
Kind regards,
Cora Connor
R.M.C. Founder
Written by
rmcadvocate
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One of the first things I found out when I discovered I had sickle cell. It's been well documented there is a link for decades, unfortunately it doesn't mean family doctors know.
I'm glad you knew about it. I've been in touch with approximately 100 families who have been affected by RMC and none of them ever heard of it until they or their loved one was diagnosed. So many of them were misdiagnosed with other things for several months because most doctors have never even heard of RMC. When my son was born with sickle cell trait in 2007, I had to go to counseling and it was never mentioned to me, nor was it in any of the literature that I received that day. I spoke with my State Senator and he sponsored a bill for me that would require hospitals and birthing facilities to send home educational materials about the complications of sickle cell disease/trait. The bill passed in June 2015 and my hope is to now work with my U.S. Senator to have the bill introduced on a national level.
Thank you. He has been cancer- free for one and a half years now. I'm doing all that I can to be a voice for those that have been affected by this. So many young promising lives have been lost to this relentless disease. Please feel free to visit our Facebook page and share...share...share.
I have a daughter with the disease and a son with the trait. I am recently finding out about this disease. I would like to know what doctor I should ask to have him tested? Should I consult with his pcp?
Yes, I would definitely speak with his pediatrician. 9 times out of 10, they are going to downplay it & tell you how "extremely rare" it is & that testing is not necessary.
Yes, the cancer is "rare" but the only reason its so "rare" is because most doctors don't know anything about it and research is slim to none. I've had people tell me that they had to make up a story dating their child's back or stomach has been hurting, just so the doctor would give them a referral to have an ultrasound of their kidney's.
Everyone that was diagnosed with renal medullary carcinoma was completely healthy leading up to their diagnosis. This cancer is so aggressive & it seems no one is interested in finding a cure or even something to prolong the lives of those affected.
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