For a decade, Ms. Elizabeth Onuoha-Ozumba has lived with Scleroderma, an autoimmune disease arising from an abnormal immune response to parts of the normal body. It is a very rare and life threatening condition in which the over active immune system is literarily at war with the body and attacks and destroys healthy body tissues. The disease causes the immune system to go against itself, attacking and destroying the body it was meant to protect and in the process, causing the skin to thicken and harden. It could also progress to the internal organs.
Ahead June 29 this year’s World Scleroderma Day, a day set aside by the International community to help create awareness about Scleroderma, Ms. Onuoha, a trained journalist and author of the book, Living with Scleroderma,” speaks to OBINNA EZUGWU about her battle with the life-threatening disease. She says it’s simply not a walk in the park.
When did you notice you had Scleroderma, and what symptoms did you have or are you having?
It all started in 2010. I noticed that whenever I wake up in the morning the fingers on my right hand had a numb feeling. At first I did not think it was anything serious. I thought I must have twisted my arm while sleeping. Gradually as the day progressed my fingers became normal. The numbness disappeared. However, after a while, the feeling came back, this time not only were my fingers feeling numb, they were also inflamed. I was having inflammation on my fingers! I had so much going on as at the time. I had professional exams, I was preparing for at the Nigerian Institute of Journalism, here in Lagos.
So I thought the stress of staying awake studying and getting in with the hustle and bustle of life in Lagos must be the reason for the discomfort I was experiencing. But before I knew what was going on, the inflammation had progressed from my fingers to my wrist. This was accompanied by a throbbing pain.
My fingers became fat like sausages. I could not hold anything with my hands. I could not do up the buttons on my clothes. I could not pick up things. This was because I could not bend my fingers. My fingers became sensitive to cold. The colour of the skin on my right hand became darker than other parts of my body. I also noticed that I got tired easily. I was in excruciating pains everyday from when I woke up to when I got back into bed at the end of the day. I was confused and did not know what to do.
A friend who noticed my absence at an event that year called me up to find out why I was not at that event. I told her what was going and she directed me to a hospital in Yaba. I got to the hospital and series of tests and x-rays were carried out to determine what was going on.
My test results came back okay that nothing was wrong with me, that everything was fine. But I knew something was wrong.
So the doctor directed me to a laboratory somewhere in Oshodi and on getting there, I was told that the tests I want to do cannot be done in Nigeria; that my blood samples will be taken to India. I must confess I was scared at this point.
But I went ahead with the tests and when my results came back, I was told I had Scleroderma. I was in shock. I have never head of that word before. It was strange to me. My doctor explained to me that my body is attacking and destroying itself. I was told that my immune system which is suppose to protect my body against diseases has suddenly gone against itself mistaking healthy cells within my body as invaders and is attacking and destroying these healthy cells. My immune system has become overactive. My skin became hard and thick in some areas and gradually spread to more areas of my body.
The word “Scleroderma” is derived from two Greek words, sclero means hard and derma means skin so you have scleroderma meaning “hard-skin.”
I was immediately referred to the LUTH dermatology clinic and since 2011 to date I have been receiving treatment there. Over the years the various symptoms I have had and the complication has been brought under reasonable control. My symptoms were many; aside my skin getting tight I also had very dry skin as a result of the tightness. My body itched badly. I could not be out in the sun because my body itched terribly when I am out and about. I felt pains all over my body especially my joints. It is a nightmare, one I still dream of waking up from till today.
Till today the sun still terrifies me. I have to prepare myself before going out. I must have an umbrella or a sun hat. I must have sun screen lotion. The sun makes me itch badly. Also I have patches on my arm and parts of my body. The melanin on my skin in some areas has been destroyed and I have this pigmentation that gets worse when I am in the sun.
How tough has it been living with it? Do you face stigmatisation?
Living with Scleroderma is not a walk in the park, I must say. Scleroderma is a tough condition on its own, having to live with it in Nigeria is frightening and difficult. If you do not have support, you cannot cope with the challenges and difficulties this disease brings with it. From the time the symptoms started I was faced with the challenges of getting an accurate diagnosis. I was literally running round in circles before I got my diagnosis from India. The health care system in Nigeria needs to be overhauled. I have interacted with other people living with scleroderma in other parts of the world and from the type of Medicare they have at their disposal, what we have here is a far cry. But despite everything, our doctors are trying their best for us here to alleviate our pains.
Scleroderma affects women more than men and that on its own is also a though pill to swallow. Scleroderma robs you of your life. At the early years of my battles with this disease, my whole life literally stood still. I had no social life. And much later when the disease became unbearable and I found myself spending almost three days or more in hospital I had to stop working. I was undergoing a kind of chemotherapy treatment which left me with life changing damages.
It is really tough living with Scleroderma. Aside from your battles with your body, you also have to contend with the attitude of people and the society. We live in a society where people do not want to take the time or make the effort to understand you. People are judgmental and always have their own theories about what is wrong with others.
I have had people tell me I am being bewitched. That I have a voodoo spell cast on me, that is why I am sick. I have been told that I need deliverance from the demons attacking me and destroying my body. I have been offered all kinds of remedies both orthodox and unorthodox. You go out there and people see you and wonder if you had hot water or hot oil poured on your skin. Some even ask if it was an acid attack when they see the pigmentation on your skin.
Some even think you have a contagious disease and think they may catch something by coming close to you. Truth is, Scleroderma is not contagious. And no one can be infected if they come close to anyone living with Scleroderma.
As a result of the stigmatization faced by people living with Scleroderma, most of us do not want to be out there and have people staring at you rudely in a public place. Scleroderma leaves you with permanent damages to your appearance, for some of us these damages totally change our physical appearance. It is not easy for some of us who still have to dress up and face the world every day.
I understand you trying to change that through awareness campaigns. What are the activities you have in this regard?
Scleroderma is a very rare autoimmune disease. It is not contagious and it has no cure. Early diagnosis and treatment of symptoms presented by patients is the only way to manage the condition. Sadly here in Nigeria and in Africa as a whole nothing much is being done to create this much needed awareness about Scleroderma. In the United States and Europe, research is going on daily towards finding a cure for scleroderma and also research is ongoing towards finding out what causes scleroderma. Organisations give money towards funding these researches.
Here in Nigeria sadly, nothing much is being done towards creating and spreading the awareness about scleroderma. The little effort being made to create and sustain awareness about Scleroderma here in Nigeria is being done by our doctors at LUTH and LASUTH. Also patients join in this effort by speaking out about their condition. We also have a small group on WhatsApp of people living with Scleroderma here in Nigeria. And the group is doing its best. Much more needs to be done.
June 29th of every year is World Scleroderma Day. It is the date set aside by the international community to create and spread the awareness about Scleroderma. Every year on that day, we also join the international community to mark world Scleroderma Day. Our doctors from LUTH and LASUTH set up a meeting and patients come together to share experiences living with this life threatening condition. We are, in our own little way, trying to keep spreading the scleroderma awareness.
This year we had great plans in our effort towards creating awareness. In fact we had gotten a team together and things were already taking shape. We had big plans this year but unfortunately the Covid 19 pandemic stopped us. That notwithstanding, next year we are going ahead with our plans. I do not want to give out too much information about our plans but it is going to be big and the first of its kind.
At the moment we have people living with scleroderma in South Africa, Zambia, United States and the United Kingdom who are also excited to be part of this effort. It has been exciting working on this project and I am so anxious for next year so my friends and I can get on with this project. I must appreciate our doctors at LUTH and LASUTH for their support towards this project.
So for this year, most of our awareness campaign to celebrate this year’s world scleroderma day will be online. It is our greatest wish that stake holders in the ministry of health at all levels come to the awareness of scleroderma. Truth is, we have people living with Scleroderma here in Nigeria who are not aware of what’s going on.
We have people who have died as a result of complications arising from Scleroderma and their families have no idea. Scleroderma may have no known cure, it is not contagious, but with early diagnosis one can manage the symptoms. That is the awareness we want to spread and help save lives.
Creating awareness for a disease many people don’t know about can be tough. How difficult has it been for you? And are there ways the government or civil society groups can help? Funding?
We live in a society where any strange thing is wished away or like our people will say “it is not my portion.” Scleroderma is not anyone’s portion, but hey, I woke up one day and found myself in a never ending battle for my life. Like I mentioned earlier Nigeria is still very backward when it comes to creating and sustaining awareness about this very rare autoimmune disease. Scleroderma should be taken seriously by everyone. Stake holders in all the health ministry all over the country should as a matter of urgency be at the forefront of this battle.
We should have awareness campaigns like we have for cancer, HIV Aids, Hepatitis and all other deadly diseases. Like I mentioned earlier all we have been able to do so far is solely without government support. Our doctors do the best they can. We have also enjoyed support from radio stations which graciously have us as guests on their health shows. Some news papers have also published our stories. Funding has been a major issue because to embark on a meaningful awareness campaign that will involve a whole lot of different campaign events and more visibility in the media will require a great deal of resources. We are hoping that next year our project will generate the much desired attention. We are happy that Medplus pharmacy believed in this project. This is very huge plus for us.
By next year, we will hit the ground running and get more support towards the project. It is hoped this effort will get people talking and the ultimately get the health ministry to sit up and take scleroderma seriously. All that is required is for people to be able to identify the early signs. It is very difficult getting a diagnosis for scleroderma. I know people not only here in Nigeria but in countries with top notch Medicare who spent years running round in circles before they finally got a diagnosis.
People need to be educated about this disease. It can happen to anyone. It is a life threatening condition if it is not well managed, and early diagnosis and management of your symptoms with medication is key to winning the war against Scleroderma. One thing I must emphasise here: scleroderma has no cure. There are no drugs meant specifically to treat it. The drugs given to patients are drugs meant for other conditions. But these drugs are given to help you cope with your symptoms and calm down your over active immune system.
You wrote a book “Living With Scleroderma.” What is it about and what motivated you to write it?
The book explains in more detail, what Scleroderma is really about. But more importantly, tells about my encounter with the disease and how I’m coping with it. For anyone who wants a copy to be able to learn more about Scleroderma, they are available at All Medplus Pharmacy outlets at the following locations: Lekki, Admiralty, The palms Mall, Saka Tinubu, Victoria Island, Ikeja city mall, Keffi Street off Awolowo way, Ikoyi.
They are also available at Glendora Book Shop, Ikeja city Mall. People can also get the books to buy from Crafties Hobby Craft limited, shop 1 Adebola mall Isaac John street, GRA Ikeja. You can also get books to buy at Arthrimed Specialist Clinic, 1 Rev. Ogunbiyi street off Oba Akinjobi street GRA Ikeja, Adams pages bookshop Machima Plaza No 2 Mambolo Close off Sultan Abubakar way, Wuse Zone 2 Abuja. Also we can deliver books to anywhere in Nigeria. We also have books in the United States and the United Kingdom.
You say the disease has no cure yet? How do you manage it?
As at today Scleroderma has no cure, but with early diagnosis and a good team comprising of a Rheumatologist and a dermatologist you stand a good chance of fighting back and reducing the damage to your body. There are no drugs tailor-made to treat scleroderma, doctors will treat the symptoms you present so that you feel better. The drug of choice most times is immuno suppressant medication.
This is given to suppress your over active immune system and slow down the rate at which your body is being damaged. Different medications are given to treat different symptoms you may present. Also it is important to note that since we have to be on these drugs to calm and suppress our immunity we literally become a walking magnet for all kinds of infectious diseases.
The current Covid 19 pandemic puts us at high risk.
Aside medication good diet and a total change of life style also help with fighting scleroderma. I try to eat very well, do stretching exercises to help my body. I recently started doing yoga and it’s been fantastic.
The drugs we take are very scarce and also very, very expensive. These drugs are not common and few people use them, as such stocking such drugs is not economically viable for pharmaceutical stores since no one will buy them. So where we find it to buy, it is very expensive.