46 years with sickle cell – and no blood transfusion!

Olutayo Faloye, DISCON

‘Losing My Hearing To SCD Has Not

Dented My Zest For life!’

– interview with a free-thinker warrior and activist, Olutayo Faloye

Olutayo Faloye is a 46-year-old Warrior who holds a B.A Linguistics Degree from the Lagos State University (LASU). Asthmatic and sickly as a child, he was diagnosed with SCD (HbSC) at the age of 3. Faloye is founder and CEO of the Disability and Sickle Cell Organization of Nigeria (DISCON). In this interview with Abro Onyekwe, he speaks about his life with SCD.

 

Marriage

I had to tread carefully because of my genotype. While still single, I got to be involved with some ladies with the AS genotype. I usually extracted the information early to determine where we stood.

I eventually met my wife, a Biology graduate. She suspected I could be an SCD Warrior. She asked and I admitted. She’s AA – the rest is history.

 

BLOOD TRANSFUSION

I have never received a blood transfusion and I once went 10 years without hospitalization.

 

‘MEMORABLE’ CRISES

Sickle Cell crisis isn’t something one should have pleasant memories about. However, two among the crises I have had stand out. First, I remember travelling from the Federal Polytechnic, Ede to Oshogbo (a distance of about 15km) all alone and unaided around 5.30 – 6.00am. I was in severe pain and en route to hospital. I didn’t feel like rousing any of my roommates to help. This was in the mid 90’s.

The other one was in 2017.  Arriving at the The Hosanna Hospital after a long night of severe pains and getting wheeled into an emergency ward, I broke down in tears. I wept not because of the excruciating pains – I was used to all that –  I wept because I felt overwhelmed with negative emotions. The thought of what I had put up with over the years, the thought of my kids, unfulfilled goals and all, came swirling at me like a tornado.

I didn’t believe I would survive that particular crisis.

 

Hospitalisation

All my life I have not been hospitalised more than 10 times. However, I believe parenthood, along with its responsibilities, seems to be placing more strain on my health in recent years. Two hospitalizations happened consecutively in the last three years which is unlike me, coupled with other breakdowns that weren’t too serious. My doctor, Dr. Chikodi Onyemkpa has cautioned me to slow down.

 

HEARING Impairment

It’s difficult to pinpoint when exactly my hearing loss started but I believe it has been there since I was a child and must have degenerated over the years. Sensorineural Hearing Loss (SNHL) is one of the known complications of SCD. I wasn’t hearing clearly when I was in secondary school but it actually dawned on me when someone drew my attention to my penchant for asking people to repeat themselves when they spoke to me.

My hearing loss is PROFOUND (Profound Bilateral SNHL). The hearing aids I have aren’t adequate for my level of hearing impairment. We have mild, severe, profound and total hearing loss. So, I have to make do without hearing aids in everyday life.

The biggest problem facing the Audiology industry is the high costs of Hearing Aids and Cochlear implants, leaving many hearing loss sufferers with no choice than to live with untreated impairment or make do with hearing aids that aren’t adequate for their needs. In my case, about half a million naira (N500, 000) is required to purchase a technologically-advanced Hearing Aid for just one ear to be able to hear clearly, watch TV, talk on phone and hear my children speak (a pair will be double the amount).

A cochlear implant, a surgically-implanted hearing device is about N4 million.

My phone calls are answered by my staff or a family member, depending on the situation. I personally handle WhatsApp messages, SMS and social media activities/marketing.

 

faloye

Discrimination/Stigmatisation

Due to my hearing loss as an offshoot of SCD, I have encountered discrimination while job hunting. I recollect being rejected for the job of an admin officer in a manufacturing company during the final stage of an interview after sharing my hearing challenge with the HR Director. Another occasion was at an academic institution where they had fears it would impact negatively on my performance. There are other instances too. It compelled me to try to conceal it during interviews but this made things even more difficult.

At a point I had to settle for jobs way below me just to earn a living. It’s really a complex situation and I have had to battle against drifting into depression.

 

DAILY LIFE WITH SCD

My daily life has not been particularly affected by Sickle Cell except in the area of communication due to my Hearing Loss. I have had to put up with a lot of wrong impressions as a result since it’s an invisible disability. It also causes some difficulties for me as an entrepreneur but God has kept me afloat. Aside the hearing aspect, you wouldn’t even suspect I have SCD.

 

OUTLOOK ON LIFE

The obstacles Sickle Cell throws in my path are a challenge I relish and work assiduously to overcome. I remember being asked by Mrs. Craig, wife of late Yinka Craig, the ace NTA broadcaster, to come and encourage other SCD warriors at the Festac – Amuwo Odofin Sickle Cell Club. She was the club’s administrator then.

During the NYSC camp orientation in Kaduna, I was the only SCD warrior who partook in and completed the endurance trek of about 18km. Others were either exempted or prevented from the exercise. I didn’t even declare my health status. I hated preferential treatment, playing the victim card or being the focus of a pity party in any form.

 

THE DISABILITY AND SICKLE CELL ORGANIZATION OF NIGERIA (DISCON)

The idea of establishing an NGO for Sickle Cell was inspired by my personal experience with it and what others with the disorder also pass through. I also lost one of my closest friends to it in 1998 just after he completed and came back home from his NYSC program. We were devastated by his death because my mother had on two occasions before his demise had him put on hospital admissions, given a blood transfusion once and footed the bills all on my appeal.

Each time I read a public appeal for help concerning a Sickle Cell patient on social media, I’m always eager to participate in crowd funding to support them. I know the pains of this debilitating disorder and its adverse effects on the life of victims. So, I decided to establish the Disability & Sickle Cell Organization of Nigeria (DISCON) in order to fulfill that yearning and passion in me to join in tackling the scourge and help improve the quality of life of victims.

 

Disability & Sickle Cell Organization Of Nigeria simply aims to project & alleviate SCD & Disabilities arising from it among its victims. Our Mission is Advocacy, Awareness & Alleviation (Mission AAA).

Freethinker

I’m not a conventional or bandwagon person – religious dogma and certain cultural norms don’t sit well with me. To add to this, I got to know I’m INFJ when I took the personality test during a program I attended about 8 years ago. In terms of religion, you’d be right to say am a rebel.

 

A Word for Sickle Cell ‘Carriers’ Contemplating Marriage

Inasmuch as there are improvements in medications and healthcare management for Sickle Cell Warriors and we do live long enough like others without the disorder, Sickle Cell Carriers should never ever contemplate dating, let alone getting married. The risks of breeding SCD children aren’t worth it. Sickle Cell comes with crises and complications and managing it is quite herculean and costly.

Sickle Cell Carriers should never ever contemplate dating, let alone getting married

 

Faloye runs a news, marketing and information service at www.grandscopemedia.com

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