New Blog Coming Soon

Wow. I have not been back on this page for such a long time I don’t even know where to begin. I have definitely been busy working backstage, so to speak, in the sickle cell community. The issue of awareness in sickle cell is one that still bothers me very much. My next blog will…

My Name is Stephen

Written By Stephen Onimole, for Sickle Cell Welfare Forum My name is Stephen Onimole and I have sickle cell anaemia. It has definitely been a struggle living with this disease. There have been so many times where I always ask why me, why do I have this, what have I done to deserve this? What…

Sickle Life

I visit Ghana when I can to at the very least enjoy the sun, sea, the tasty food and as a reality check for myself. On my most recent trip, I had the honour of speaking to Dr Enam Sefakor Bankas, the founder of Sickle Life, a fantastic project in Ghana, educating people about sickle…

Switching From DLA To PIP

If you are getting DLA and its been awarded to you for life or for an indefinite period, bear in mind that DWP intends to have all existing DLAs including life or indefinite awards reassessed. DWP will contact you and ask you to complete a form for reassessment but what DWP will not tell you…

My Young Hero

I would like to take a moment to salute a brave 16 year old boy and his mother who took on this horrible system of welfare support decision making and won. A system that would rather see a boy in so much pain. A boy diagnosed with Avascular Necrosis, a boy agonising over the fact…

Dedicated To Jane.

You were 19, beautiful, intelligent, full of promise and all you wanted to do was to become a successful Accountant so that you could put a smile on your mother’s face again. Jane didn’t know she would die of Sickle Cell complications. Not a single soul in her family knew she had this genetic condition….

Disrupt Welfare For Sickle – Keep It Simple

I’ve worked within the sickle cell community now for a little under two years and am pleased with what we’ve achieved so far in the area of welfare support; personal independence payment (PIP) in particular. As I’ve always said, PIP is not the easiest of benefits to get because it was designed not to be…

Disrupt Welfare For Sickle

Millennials, Trending, Disrupt. These words are everywhere these days. I love this one, DISRUPT. Every time some smart person comes up with something original, imaginative, visionary or totally crazy which turns into a multi billion dollar business, everyone wishes it was they who dreamt up this disruptive idea. These crazy ideas and inventions change our…

Sickle Cell And Fathers

June 19 marked both World Sickle Cell and Father’s day. In our quest to generate a bit more awareness of this uniquely challenging condition and celebrate fathers at the same time, it is perhaps appropriate to also look at fathers and the role they play in this story of Sickle Cell Disease and the ever…