Like all sufferers, Della Seneadza inherited sickle cell
The first painful episode came when I was seven years old. I was reading on the sofa after school and I felt severe pains in my back.
It was so bad, I ran to my mother crying.
As a child, my parents always asked me if I had taken my medication. That was when I realised I was different and had to face up to my condition.
The stabbing pain in my joints is what is commonly known as a "crisis". It ranges from mild to acute, and can last from 30 minutes to several months.
My worst crisis lasted four months with continuous pain and vomiting. When I have a crisis at night, the pain is unbearable and I cannot control myself. It's very difficult to find a comfortable position and I end up screaming.
I've had a lot of sleepless nights. Obviously, you can't sleep when you are in so much pain.
Drug addiction
I've had many close shaves with death.
Once I walked into hospital during a crisis and when I got back my haemoglobin test results, my levels were so low the doctors were surprised I was still alive - let alone able to walk. Anyone else with an HP as low as mine would have died - God is always with me.
When I was young, my family never knew when a teacher would turn up at their home with me in tow screaming, in a crisis. They were always worried about me, but I still had to do my fair share of washing the dishes - I was never allowed to wallow in my condition or use it as an excuse.
Sickle cell clinics, support groups and re-hab centres are on the backburner of everybody's mind
I have to avoid overly strenuous activities, but I do enjoy playing football, although I have to force myself to stop when I get tired. I have learnt to become an avid reader instead.
Rather than excelling physically outdoors, I stay in and think creatively. I write music and come up with programme ideas. I use my mind rather than my body. Most of the time, I see myself as a human being rather than a sickle cell sufferer.
I coped very well with the pain until I got to university. The unpredictable nature of each crisis and the severity of the pain affected my studies.
My media degree involved a lot of TV production and the last thing I needed was to end up in hospital for two months and start all over again. I couldn't afford to miss lectures or to let my social life suffer.
At the time, two of my closest university friends died of sickle cell and I began to live in fear of the next crisis. I wondered if I would survive, so I began to self-medicate.
I injected pethadine to subdue the pain. Initially, it made me feel I could get on with my life and be on top of my studies, but soon I became addicted to an expensive drug and so the downward spiral began.
Relationships
I couldn't afford my addiction, so I began borrowing money which I was unable to pay back. I was desperate and even stole money.
Pethadine made me so drowsy that I ended up at home asleep most of the time. I missed so many lectures, I had to drop out of university.
Eventually my family discovered my secret and we are all still recovering from the consequences. But I am determined to go back and finish my degree.
Sickle blood cells are shaped like a sickle rather than round
It never occurred to me to blame my parents or God. My mother is a nurse and my father was a doctor. People have said they should have known better, but I am the only one out of six brothers with full-blown sickle cell anaemia. It could have happened to anyone.
I don't resent their good health - I love my brothers too much. If God had to hand out sickle cell all over again, I'd want him to pick me. I wouldn't wish it on my worst enemy.
Now that I'm older, I've realised the significance of people's blood types. When I enter into a new relationship, she must be completely free from sickle cell anaemia to prevent the cycle from happening again.
I ask girls about their geno type and if they've been tested for sickle cell. If they don't give the right answers, I'd rather just be friends.
I don't want to hurt anyone or put them under pressure. I'm a bit of a loner now.
The support from my family has been amazing, but sadly the same cannot be said of Ghanaian society. Sickle cell clinics, support groups and re-hab centres are on the back burner of everybody's mind.
In a developing country, people are more concerned about jobs and economic development rather than supporting those with disabilities.
Do you suffer from sickle cell or know someone who does? Is there enough support available for sickle cell sufferers in your country? Are you a carrier of the disease concerned about forming relationships and having children with another carrier? Is it ethical to have children with another carrier when the risk of giving birth to a sickle cell sufferer is significantly increased? Send us your experiences using the form below.
If you would like to join Africa Have Your Say to debate this topic LIVE on air on Wednesday 16 May at 1600 GMT, please include a telephone number. It will not be published. You can also send an SMS text message to +44 77 86 20 20 08.
The comments below reflect the balance of opinion we have received so far:
Sickle cell is a very traumatizing illness, most of those suffering with this disease are not treated well in an Africa. I have a friend who is suffering from this disease and he can't do any hard work. He has a sore on his leg that can't be cure. He spends all the small money he has on buying drugs. When ever he engages in a relationship most girls will reject him. I think all what they is support from peers, friends and family members.
Eric Mbumbouh, Bamenda,Cameroon
My only child who is 15 years of age is a sickler.She is very brilliant she came first in the National Primary School Examination for the entire country in 2004 and still continues to perform excellently in her present secondary school. Frankly speaking, I am always in a depressed state of mind when I think about this sickness which to this date has no cure. I am even thinking of taking her out to another country with better medical services, opportunities and malaria free enviroment.Halsbury Turay,Sierra Leone
Halsbury Turay, Freetown, Sierra Leone
Quite amazing to read real life stories. I am a suffering victim but my suffering is done in silence and only my family and closest of friends know about this.
Antony, Nairobi Kenya
I'm a researcher on tropical diseases ,I think it will big mistake for two carriers of the gene to get marry and have children and ignore the potential consequences. The fact that two carriers have only a probability of 25% to bring forth children with sickle cell disease doesn't however imply that if they have four children only one will have the disease. Just like HIV/AIDS, I think potential partners should go in for the sickle cell test and take appropriate precautions to prevent innocent children having the disease. The current treatment which is bone marrow transplant is available in most developing countries and where it even exist, the cost is very high for most people to afford
Chi Primus, Bamenda, Cameroon
I must confess, I didn't know about the illness until I read Della Seneadza's story
Ocandy kabelo Themba, Botswana
I have been permanently traumatised by Africa's health care. I lost two siblings and two children to this disease. My pain is compounded daily by the near total lack of attention, and resources directed at providing care and solution for sufferers. Instead I have seen the social ostracising of citizens with the sickle cell. It is unfortunate, heartless and wicked. We need to give priority funding to research institutes, to study, and provide a cure.
Ola Ooloke, Lagos, Nigeria
Sickle cell is not common in Botswana, and most Botswana have no idea about the disease, I must confess, I didn't know about the illness until I read Della Seneadza's story. Sickle cell sounds serious and our government is too reluctant and ignorant on these issue .I will love to say thank to Della because he is the continents hero, we love you man God bless
Ocandy kabelo Themba, Botswana
In Zambia, we have born the consequences and burdens of many incurable diseases including sickle cell. The will to help may be there, but in a country that is ravaged by poverty, it is very challenging for anybody to accept responsibility let alone look after oneself. We believe in the fellowship of man because we are humanists, but sadly, there is just too much on our plates to cope with. With three quarters of our medical staff migrating for greener pastures, the few over stretched doctors do not have time to spend on helping sickle cell patients. The only way is to let nature take its course. This is when traditional healers cash in on ignorant folk that do not know and realise that certain diseases are terminal. To start telling our folks that some diseases may be hereditary is just as good as telling them to fly to the moon on a broom stick.
Shuttie F.N.Libuta, Kitwe/Zambia/ Central Africa
While I empathise with all the sufferers of sickle cell anaemia, I do not think it would be morally justified for two carriers to commit themselves into any long term relationship that will bring forth progeny. Just like partners whose union can bring forth sickle cell anaemia carriers, it should be a matter of consent for these persons to call off any such union. No matter how strong our affection for one another might be, I think we bear a moral responsibility for giving our offspring's a happy life. The ordeal of sickle cell patients is quite telling and we should minimize such occurrences to the best of our ability.
Israel Ambe Ayongwa, Bamenda, Cameroon
Sickle cell is a terrible disease. I used to pity my friend who was suffering from it. He was in and out of the hospital. Hardly a week or two goes by without taking a day off school. My friend's sister refused to marry her boyfriend of ten years because they were both carriers. The consequence is very devastating. It is imperative for couples to always check themselves out before getting married. It's one thing one cannot afford to compromise. As far as Nigeria goes, there is not enough support for the sufferers. They are at the mercy of God. I checked before getting married. Ignorance is not an excuse. Get the test done and have your peace of mind.
Omorodion Osula, Boston, USA
My son has sickle cell. It is a terrible thing to experience or witness. Whenever he is in crisis, I feel so sorry for him and cry with him. The pains are very severe. In Nigeria, a drug was discovered which I have been using since I got to know about it. For me, it is very effective indeed! But one has to take it every day. It is very expensive considering the low standard of living in Nigeria. The government should assist sickle cell sufferers just as they assist HIV/AIDS patients. Godwin
Godwin Ondoma, Abuja, Nigeria
It is high time we start talking about deadly diseases like this one and we go through this crisis together even if we are not suffering from it . I do have relatives who suffer from it, so it is hard dealing with this situation. Seeing a relative or loved one in terrible pain and you cannot do anything to help, is just too much of a nightmare. I have a junior sister suffering from this disease and would like to know if there are any particular drugs for this illness or if there is a vaccine for it. As for support, I think the government has to do lot of sensitisation on this topic because a lot of people do not know about it and are attributing it to either AIDS or witchcraft.
Edith Kode, Buea, Cameroon
I have lived with this disease for almost 19 years now. The suffering and pain I have passed through only God knows . I have felt the same pain every day. I have visited almost all Ugandan hospitals but all in vein . Our governments should do something and I encourage whoever is suffering from this disease should speak out for Africa.
Musika stodart, Kampala Uganda
I am a carrier and occasionally my joints and bones hurt. I am very passionate about this condition and I would like to know more about it. I am from Sierra Leone. Why is this condition prevalent with blacks especially Africans?
Mohamed Johnson-Kanu, Moranbah QLD Australia
My girlfriend suffered when I was in at the University of Cape Coast. She was beautiful but it was a big problem. She was very sociable so you couldn't tell if she was having sickle cell. She is very selective when it comes to food. She comes from a well to do family, so she gets enough support whenever the pain starts. I only got to know when she suddenly started complaining about her leg. I was confused and did not know what to do. Later she was admitted to Cape Coast Hospital. I normally experience joint pains during cold weather and so I have to take folic acid daily. I was told the truth about her and it was difficult for us to separate, but both parents thought it was for our own good, if we want to have healthy babies in the future.
Noah nash , Aflao-Ghana
I have sickle cell anaemia (SS) and my life has not been an easy one. I will turn 40 in July and I am a single parent of a lovely, healthy daughter who will turn 11 in June. She is a carrier (AS). I listened to your Perspective programme and would like to advise Della's brother that it's not too late not to have children will his 'AS' fiance and risk sentencing an innocent child to a life of pain.
Jane Hammond, Accra Ghana
Given the severity of the sickle cell condition, efforts should be made to prevent it from the onset. For a start, the Catholic Church in Nigeria should be commended for declining to wed any couple who are able to have a sickle cell baby.
Edward Ekwelem, London UK
Sickle Cell just like any other illness is more of a battle of the mind than just the physical symptoms. If you win the mind battle and defeat the fear of the disease, you defeat sickle cell. I was tested to be SS and the early period of my life till my early 20s. I was ruled by fear and felt ill, but I made up my mind to live beyond fear and achieve whatever I set my mind to achieve. Ever since I have won the battle over the disease. I am now 31 and I cannot remember the last time I went to hospital or had a crisis. I have not been to the hospital for the past five years and I have achieved whatever I set my heart to achieve. I am a graduate with a 2:1 from Nigeria, I have 2 postgraduate Masters from world renowned universities, I have carried out research projects for multilateral development institutions, I own a company and the list continues. Truly I have achieved all these on my own! One day I will tell a success story about this. Many hardly associate me with sickle cell. Education is important to mitigate the spread, but for SS carriers, win the battle of the mind. You are normal and can be whatever you set you heart to achieve.
E. O, UK
I was born with sickle cell anemia. I'm now 44 and I've coped with crisis after crisis all my life. I never knew I would make it to 40. Talking about excruciating pain, that's my daily diet. From Sierra Leone to North America, pain has always been my guardian angel. But that's the cross that every sickle cell patient has to bear. The question is how do we help others who are less knowledgeable about the disease to cope with it? Coming to America helped me a lot. When I was in Africa, I didn't know how to cope with a crisis every week or every two weeks. I really would like to get in touch with sickle cells patients to tell them my experience. John Sesay.
John Sesay, Silver Srping, Maryland. USA
I have a close relative who is a sickler. I think it's really unfair on the children for 2 consenting adults, who know they are both carriers (AS), to decide to go ahead and get married and have children. It's unfair on the children, so I think it's better that people make a conscious effort to avoid putting any child through pain. It can be very bad!
funlola, lagos, nigeria
As a nurse I have worked on persons suffering with sickle cell disease. Their health concerns are enormous especially here in Cameroon where most of them have little knowledge how to go about their condition. As to whether they should have children with fellow sicklers, it is a decison that should be left to them after THOROUGH COUNSELLING. It is thier decsion and no one else.
Nshom Ernest Bah, Mbingo Cameroon
I lost an uncle and an aunt to sickle cell. This meant that I was not opportuned to enjoy the love of these people which would have been wonderful. Now, my mother only lives to tell stories of these intelligent guys. If only they were around to be role models for my intelligence. Now, I have to look to myself and get support from the inside.Thank God no one remains with it in my extended family. But I feel for the numerous families who have to struggle with this silent but painful killer.
Kolo Kenneth Kadiri, Jos, Nigeria
