Sickle cell warrior and activist, Rachel Guobadia Inneh, has called for the removal of stigma surrounding sickle cell in order to spread awareness and to help sufferers get the help they need.
Speaking at her Golden Jubilee celebration held in Lagos recently, the United Kingdom-based Information Technology (IT) specialist not only celebrated her 50th birthday in style, but also launched the Rachel Guobadia Inneh Foundation for Sickle Cell Disease Awareness and Support.
“We need to remove the stigma surrounding sickle cell. It was forgivable in the past because awareness was poorbut there is no excuse now. There is better awareness in the cities but not so much in many rural areas, as a lot ofpeople are still going on to marry and have kids without checking their genotypes,” she said.
Launching the foundation, former top Super Eagles’ player, Segun Odegbami, praised Inneh’s tenacity, strength, can-do spirit and never-give-up abillity. Revealing that they met over 30 years ago, he said her spirit and go-getter attitude remains the same .
Fitness expert, Maje Ayida, went on to tutor attendees on the importance of taking care of their health and living healthy.
One of the warriors at the event, Funmilayo Ibidapo, praised the celebrant, adding that she was inspired via social media on how the latter spoke openly about sickle cell and the challenges involved.
Ibidapo pointed out that there is still a lot of stigma attached to sickle cell and people that suffer from it, “but Rachael makes it look so easy with the way she talks openly about it, inspiring many of us. I hope more people speak out as that is the only way to not just remove the stigma but also get more research directed to the disease. We want the government to direct more funding and research towards sickle cell as there are so many sufferers. Awareness is still very poor. In many cases, we see two sickle cell carriers getting married and going on to have children, this should not be allowed to happen,” she said.
Speaking on the motivation behind the foundation, Inneh said: “I have been running this foundation informally for 15 years on my own. I knew what my mother went through to look after me. She sold her property to raise my hospital bills as I was always in and out of hospitals. I was born and raised in Benin and I know what it is not to be able to buy injections, drugs and even as little as cottonwool. Medication that warriors use has increased by over 200 per cent and many can no longer afford them.”
The philanthropist said she always comes back to Nigeria yearly to give back and help other warriors and felt this was the right time to start the foundation. “I currently support and take care of over 200 warriors. I try to help when I can and hopefully, with this foundation, we will be able to reach even more people.”
The mother of two boys said it has been a long, hard road, but she would continue to raise awareness about sickle cell in every way she could. “There is still so much silence on this disease in Nigeria and it is aided by religion and culture but when we don’t talk about it, how do we get help and support? I use my Facebook to spread awareness because the disease is deadly and it is a burden not just to the sufferer but their loved ones as well. My mom is 76 and still cries every time I have crisis. It affects my parents, children and friends, it is not easy,” she said.
