When Abiola Segun- Williams, Tinsel actress who has also featured in many movies, walked into my office this year, it took a lot of effort for me to conceal my shock. She looked so lean and frail. She could barely talk but managed to whisper. Her skin had patches on them. It was an awkward moment for me; l wasn’t sure how much I could pry. A million questions raced through my mind. What manner of illness is this? I wondered. I reached out and touched her skin and it was stone hard. I panicked. But Abiola managed a feeble smile and teased; “So sis, why are you whispering too?” I didn’t realize I was whispering as well. “You should have seen me a few months ago, l am getting better now.” She assured me. “It’s Scleroderma, l was diagnosed with systemic sclerosis with Sjogren syndrome” she said. – *BETTY IRABOR*
*MY BATTLE WITH SCLERODERMA*
Exclusive Interview is below…..
*Scleroderma is an auto-immune rheumatic disease that causes the hardening of the skin. What really happens to a patient as in your case?*
What happens is the cells produce too much collagen and the connective tissues in the body begin to harden. In some cases, it affects all the internal organs. They harden like stone and the person dies. Thank God my organs are all in perfect condition. However, when l was in India in the course of doing several tests, doctors found cysts and fluid in my lungs, and they quickly attacked that so that my lungs won’t be further implicated.
The chances of survival would be slim if not quickly diagnosed and if the internal organs are implicated. I AM A SURVIVAL !!! Though medical science doesn’t have a cure for it, God told me personally He has brought me health and cure and He has revealed unto me the abundance of HIS peace and truth.
When l was told about my lungs, l can’t lie, l was a bit rattled. I called my doctor in Nigeria and sent him the report. I told my friends who always stand by me in prayer. I prayed and knew l would be just fine.
*lt is said that to have a genetic predisposition and could be triggered by environmental causes…….*
There is no one in my family that l know who has had or has it. However, l have been exposed to chemicals from paints. I had this exposure while on the set of Tinsel. At the time l had no idea what the implication of breathing such levels of chemicals could do to my health, but l just used to cough a lot. Once l entered the studio, l’d just start coughing. This went on for a long time when we were in the Ojota studios, especially when new sets had just been painted. It, however, became worse when we moved to Obasa studios after the Ojota studio sadly got burnt. I didn’t know the burning of that studio was going to alter my life radically. When we moved to Obasa, a lot of new sets were built. It was rainy season so the flats were kept in the studio to dry. Every time l entered that studio, l coughed. My eyes ran tears continuously and l felt very dizzy. It had grave effects on me. I mentioned this to our production executives at the time because l began to feel very ill. Extreme fatigue and exhaustion set it. So l went for colon cleansing because l felt like l had consumed a lot of toxins. After two or three cleansings, l felt that should have cleansed my system well enough. However, l began to experience a lot of symptoms l didn’t understand.
*How long did it take before proper diagnosis was made?*
I went to a dermartologist who had no idea what the problem was. He gave me all sorts of creams to use and he thought it was vitiligo. After a year without improvement in my overall condition, a lady in Tinsel advised me to go to the dermatologist department of LUTH. Interestingly, when the doctors saw me they immediately knew what it was. The head of the team immediately said; “this is Scleroderma”. I said what is that? That’s where the journey started.
*What were the major symptoms at the onset?*
Chronic fatigue was a consistent and persistent thing. Then there was shortness of breath, pain and listlessness. I felt unwell. I started taking a lot of supplements to shore up my energy levels. I took supplements for kidney and liver cleansing. I took supplements for many elements such as selenium, iron, folic acid, bco, vitamic c, etc.
There were loads of supplements actually. At this time, l didn’t know what the problem was. I was my own doctor. I read everything on the internet that seemed to relate with my symptoms. I noticed my teeth had problems. My eyes had issues. My limbs became heavy to move. My feet, hands, face were swollen. I went very dark. My skin began to harden, itch and became very scaly. I was in pain twenty four seven. I couldn’t climb stairs and couldn’t swallow well. I would nearly choke on my food. I suffered severe heartburns all the time. I woke up many nights choking on the food I had eaten. I would pray and say “Lord, let me not choke to death in my sleep”.
*What was it like that moment it dawned on you that this could be fatal?*
Interestingly, l had absolute peace. God had promised me long life. At the beginning of that year of diagnosis (2015). God had promised to restore everything I lose, so l was quite prepared for the journey ahead. To restore, that means there was going to be a loss abi? I was able to lose a lot but he assured me of recovery. A full and plentiful recovery.
*How did you condition yourself to deal with the many physical changes?*
I basically stopped looking in the mirror. I told myself this was only a phase I was passing through. My face had changed completely. My skin looked absolutely scary. I was as skinny as a rake, but my focus was my health rather than how l looked. I was in too much pain now to care about my looks.
*You had to take a break from acting; that must have had a major toll on your active income?*
There was an original knee jerk reaction when l had to stop acting and slow down on my other entertainment business, but l had to trust God. He said I will pass through the waters they will not drown me. I will pass through the fire it will not consume me!! I was reassured by this. By then, l was spending money like crazy on my health. But even in the blight of work, God provided one or two jobs in my events entertainment service that helped me tide the storm. A few friends also stood up for me financially, emotionally, spiritually and physically.
*From reading up on Systemic sclerosis with Sjorgren syndrome, it can be deadly. How did you deal with that?*
Truth be told, I wasn’t scared at all of death. If l die, l’d go to heaven. So it’s a win-win situation. It was just the pain that was too much for me. I am never scared of death.
*Take us through some of the most difficult periods since the diagnosis?*
Apparently, l had been feeling serious exhaustion, dryness of eyes, dryness of mouth for like three years before diagnosis last year. The exposure that I experienced actually started in 2013. I was always feeling fatigued. It however started degenerating in 2014 and became worse last year. I absolutely crumbled by January this year. The truth be told, l have been held up by family and friends because there was a time l couldn’t pray because I was in so much pain. I remember calling my friend Kike so many times when l was in pain. Hearing me in pain used to frustrate her because she lives in Abuja. She always felt so helpless. I decided to stop calling her when in pain. Then l’d call my other friend, Funmi Igbeda and she would send prayers to me and raise prayer warriors for me. Then another friend, Funmi Johnson, called my Pastor and raised an alarm about my health because I didn’t tell anyone. At the time, only she and her husband knew apart from my own husband. It was a terrible time of my life. Na wa sis.
At some point, l was at zero level emotionally, physically and spiritually. When l realized l was at ground zero, l called for help. I needed help. I even sought the help of a psychologist because there were things l needed to deal with and l needed help to walk through them.
*What were the other things you needed to deal with?*
For me, I needed to be in a space of peace. I also needed to let go of offenses and emotional hurts because all these affect your auto immune system as well, apart from environmental factors which is why support is extremely important to healing.
*I must say you look better and stronger from when l first saw you*
Ah! Sis, l still have the de-pigmentation and scarrings on my back….my chest, neck and upper arms. The last time you saw me, my skin was still very dry. But my doctor here suggested l buy frankinscence oil when l travelled and it turned out to be a miracle oil. I put a few drops in my bath water and in my almond oil for my body. Now l massage my body with it day and night and it has radically reduced the inflammation and pain. The hardness is loosening and the patches are getting softer and l have put on some weight o. I just love the way I look!!!
*How did you raise the fund for your treatment?*
When l was going to India, my Pastor, Taiwo Odukoya paid for my treatment for the two months l was there. I had such an overflow of support and goodwill and that strengthened me. My friend Kike was with me all the time l was in India through all the treatments, doctors visits, pain and triumphs. Funmi Johnson and her husband supported me financially, spiritually and emotionally. It was incredible to know l had such a strong back up. My sis Ronke Aladesuru and prayer warrior, my brother in England were all there for me. I thank them all. The heroine of all this would be my 15 year old daughter who took overwhelming care of me even when l was cranky due to excruciating pain. She was my care giver when she was not at school.
*What was your experience in India like?*
Sis, India is miles ahead of us in heath care o. I was primarily in an Ayurveda health centre where l had regular visits from the doctors everyday. I saw at least two doctors everyday three times a day. I had very special diet and they were very attentive to my condition which was very remarkable. I could call anytime of the day or night if in pain or in need of anything. Then when I went for my lungs treatment in an orthodox hospital, come and see equipment o sis. Every modern equipment possible was available and all the tests l did were extremely cheap compared to what l paid here for the same tests. I loved how detailed and technologically advanced they are. Their medical personnel were as many as patients if not more. We need to seriously rethink our health care policies. It’s such a shame that a country that is so richly blessed as ours can’t provide adequate health care for it’s citizens. It doesn’t say much for our healthcare system because it’s not available and where it is, it’s expensive.
*Obviously, you now have to embrace a new lifestyle!*
My first contact with integrative medicine was with Dr Faith who helped me understand my diet had to change drastically. I completely shenked sugar. No more sugar at all. I stopped all those canned or fruit juices in boxes. Sugar inflames your body and exarcebates your condition. Sugar, simply put, is just poison. I had to stop all forms of refined carbs and white or brown flour. No bread at all, which l miss sometimes so incredibly.
* Are we killing ourselves with poor diet and lifestyle choices?*
Absolutely. It was my change in diet that helped me stop the progression of the disease o. !!! It couldn’t go any further. That’s why my internal organs are not affected. I also had to stop eating meat completely. When I was in India, l didn’t eat sort of meat, fish or chicken…just vegetables and a little carb. When I returned, l weighed 51 kilos. I am back to 57 kilos.
*Are you getting back to work soon?*
God is opening effective doors for me. All of which no man or demon can shut. I am able to return to work now. God is my strength. I take my life back and in a hundred fold. All that the enemy intended for evil the Lord has turned around for my greater good. The devil is always a liar!!!
*Do you plan to take any legal action against Tinsel Producers?*
I have no such plans. However, l believe in fair play and justice. But I won’t fight it. God always fights for me.
*Do you sometimes worry about your look?*
When vanity was being distributed I was at the feet of Jesus learning how to write scripts and other things. I barely got that memo. The thing is, l am someone whose core sense of self-evaluation has never been based on anyone’s approval. I have never assessed my self-based on mine or anyone’s look. I assess people by their personalities, character and vision. I loved to take care of myself especially my skin and l did have very lovely skin until now. Since my self-worth was never based on how l looked or what I own or do not own, I am not negatively affected. I accept and love myself whatever l look like. I am not my face. I am beyond my face and skin.
*What lessons have you learnt from this journey that you would like to share?*
I have learnt that there is a friend that sticketh closer than a brother. It is when hard times hit you that you know those who really love you. I have gone through a process of self-discovery and l am OK with that. I know one thing is for sure; l will never walk alone.
As shared with us by Mrs. Abiola Sgun Williams her story as published by Genevive Magazine in 2016, interviewed by Betty Irabor.