Born with Sickle Cell Disease, got cured: My tale of two Worlds – Habiba Sanusi

Hello everyone, we are talking about sickle cell disease today. On another episode of our ”Survivor Series” where we bring to you the inspiring stories of many strong Nigerians. People who have battled or experienced first hand, the battle of a loved one with a terminal health challenge like cancer and sickle cell disease.

Healthfacts brings to you their stories and how they pulled through in order to enlighten the public and encourage anyone out there who might be going through a similar challenge.

Our Survivor for this month is Habibah H. Sanusi, a Nigerian lady who lived with Sickle Cell Anaemia and got cured in 2008 through a Bone Marrow Transplant (BMT). Habibah now runs a Sickle Cell Foundation alongside her sister, Samira Sanusi who has a similar story. Here is how our chat went with her:

HealthFacts: Tell us about living with Sickle Cell Disease

Habibah: I doubt if anyone can fully explain living with a chronic disease such as Sickle Cell. What I can say is that it is a life of constant crisis, pain, pain management, and hospitalization. Throughout all these issues, you are also trying to have a normal life.

Is sickle cell a thing to be ashamed of?

Living with Sickle Cell Disease is tough but there’s nothing to be ashamed of. Although for many, shame is a stigma they deal with while they navigate living through it. I was born with a genetic mutation causing the hemoglobin in red blood cells to distort to a sickle shape when deoxygenated.

Life becomes complicated with pain which in-turn hinders one’s growth; physically, mind and body. It creates a life of numerous principles of do’s and don’t’s that actually stand in as your normalcy. Where others are free and able to handle one thing, a Sickle Cell Warrior faces challenges meeting up by virtue of pain. Not because the person lacks the intellect or capacity to handle it. To this effect, a lot of people deal with their “incapacity” in a negative form.

What’s the biggest myth about Sickle Cell Disease?

One of the topmost myths about Sickle Cell Disease is the conceived notion that people don’t live beyond early adulthood age. In other words, there is a low mortality rate. This simply isn’t true. The facts at play here show a different story.

Quality healthcare, one which takes care of patient conditions, complications and general well-being can be had. This also includes good living condition/ environment, and proper nutrition. This makes the burden a little lighter.

In addition, the older a patient gets, the better care one takes of one’s health. As you’re older you are wise enough to cater to your health. You make better lifestyle choices. This helps to avoid triggers and danger-points as much as possible. With these measures, a Warrior is able to grow past the “age threshold” previously believed to be a living mark.

Let’s talk about Bone Marrow Transplant (BMT)

Who can donate bone marrow? Does it have to be a person’s sibling? If yes, what happens to an only child? And how old does a person have to be to donate bone marrow?

Anyone can be a Bone Marrow donor. As long as they meet the required guidelines according to the worldwide Bone Marrow registry:

• Be the Match
• One has to be between the ages of 18 and 60.
• must be a HLA-match
• Has to undergo tests and be cleared of certain transmittable diseases such as HIV and Hepatitis. Also, autoimmune Diseases, pregnancy, and many others.However, depending on the need for the Bone Marrow Transplant, careful evaluation by one’s Transplant team is needed. The Team would be in a better position to give the ultimate decision whether or not a donor is considered.There is a chance of finding a Human Leukocyte Antigen – HLA-match in siblings. However, in cases where one is an only child, the chances of finding a donor rely heavily on the Bone Marrow Registries. Nigeria is currently working on its registry and we (Samira Sanusi Sickle Cell Foundation) took part in this Donation Registry program last month in Abuja.This is a positive move to have as many close matches as possible in the registry to make donors more available and accessible. In many countries where technology is better, there is the option for families to have Saviour Siblings. A Saviour Sibling is a planned pregnancy through Invitro-Fertilisation who is born to provide organ or cell transplantation to an affected sibling with a fatal disease like Sickle Cell Disease or Cancer.

Can you say BMT is safe and worth all the pains and inconveniences involved afterward?

A Bone Marrow Transplant is a life-saving procedure. And like any other major life-saving procedure, carries its own set of success and risks. This depends on factors such as severity of the disease and the condition of the transplant recipient.

In my own case, I would attest that undergoing a Bone Marrow Transplant was a positive decision as it has saved my life for almost 10 years now. I am living a better quality of life and it was a risk worth taking. The pain and inconveniences that follow can be outweighed by the positive outcome now that I am living Sickle Cell-free. Bear in mind that individualism plays a huge part in this life-changing experience and people react positively or negatively in their own unique way(s).

Can BMT operations be done in Nigeria? 

I believe Bone Marrow Transplant has been carried out in Nigeria before at the University of Benin Teaching Hospital. But I cannot attest to the outcome nor can I comment on the quality of care and success rate.

However, my perspective on this as someone who underwent this procedure at one of the leading facilities – St. Anna Kinderspital, Vienna, Austria, I know for a fact that Nigeria is not fully equipped nor is capable of handling a Bone Marrow Transplant.

We can say that Nigeria has been talking about working towards providing a safe, established expertise facility but until then. Until we have a reasonable substance to our Bone Marrow Registry, expert teams, and after-care. Until then, anyone looking for a BMT should be advised to seek out the best of the best. After all, we are talking about life here.

ALSO READ: Survivor Series 001: Before we knew my child had cancer, it was at stage 4 – Childhood cancer advocate

What are the hopes for people who cannot afford BMT in Nigeria?

Given that BMT is not readily available in Nigeria, anyone qualified to undergo the procedure has to result to seeking for other experts abroad. Considering the massive cost implications, the chances are slim that one finds a financier who is willing to sponsor a patient. Unfortunately, we are not talking about a readily available amount of money.

Sponsoring a BMT for a patient or two might be something giant corporations might pick up as their Social Responsibility. We look to them, able humanitarians, and the Government to create an avenue where such sponsorship might exist. On our own level as an organisation and as Individuals who have gone through the process, all we can do is to advocate for this. We do this while we assist individuals on their quest to finding facilities that can cater for them.

Can you tell us a little about the Samira Sickle Cell Foundation?

How did you start the foundation and what is the aim of the foundation?

I am the Co-Founder of my Foundation – Samira Sanusi Sickle Cell Foundation. Having gone through all that I and my Sister have gone through. Eeach with our individual sets of health scares, complications, and successes with Bone Marrow Transplant and accomplishments, health-wise and in life generally, our focus shifted towards creating a platform for Warriors and caregivers to unite, take care of each other and with one voice – advocate for all.

We believe that the only way we can put our success to mean more than just being healed is also by sharing every little bit of what we can offer. Three years ago we established and actively began operations with a series of projects ranging from fund-raising for patients most in need, to helping them meet up with medical bills. We also lent our voices to create awareness, educate and sensitize others for Genotype awareness (being the only way of avoiding Sickle Cell by discouraging marrying couples with incompatible Genotypes).

Is the SSSCF meant for Nigerians alone to benefit?

In as much as Samira Sanusi Sickle Cell Foundation is a Nigerian non-profit voluntary-based organization catering to Sickle Cell Warriors Nationwide. We are open to Warriors from all walks of life and we welcome anyone to be part of us. Besides, SCD is not just a Nigerian problem, it affects more people than we think, including non-Africans.

Considering the fact that Sickle Cell Disease has a treatment, do you think people with AS and SS genotype should go ahead and get married since there’s a solution to helping the health of the SS child(ren)?

This is quite an easy question to answer. In as much as we now know that Sickle Cell Disease has a cure, however inaccessible to many. It is still a very bad idea for Genotype/ Genetic incompatible couples to have children. The key factor here remains finances. For so long as Bone Marrow Transplant is not a N1,000 pill, there is no risk worth justifying a person with Genotype AS marrying and/or having children with an SS Genotype.

The pain simply isn’t worth the “love”. The love would be okay until you have a baby. Then life shapes your reality once that baby is diagnosed with Sickle Cell Anaemia. You can avoid 99% of future pain and agony by choosing to be unselfish and not marry or have kids.

It also is the most responsible thing to do. It is very easy for people like me to say NO to this question because I have lived the pain, breathed the pain. I have walked the numerous hospital trips that pause my life, and I have risen above it all; good and bad.

So no, it is not advisable for non-Genotype compatible couples to have children. I wish to see a Civil and educated society in Nigeria that enables the legislative bodies to make this a national priority. Let Genotype be as pronounced as we identifying ourselves with our blood groups and other identification markers on our identity cards and drivers’ licenses. If other countries can do it so can we.

Word of encouragement to sickle cell warriors out there?

Never give up on yourself. Be your own advocate so others can stand with you. Challenge yourself no matter how tough you have it, for you never know when and how you may strive. I stand with every Sickle Cell Warrior and united we will fight against Sickle Cell.

Thank you so much, Habiba for your time and the warm welcome.

For more information about the SSSC foundation, kindly click here.