By Iris Anie-Annan
On the 29th August, 1999 , I gave birth to my first son . The father and I were so happy. A few days later when I sent him to St Luke’s Clinic, he was diagnosed with Jaundice.
My nightmare began. We were transferred to 37 Military Hospital. For two weeks we stayed at the Hospital till we were discharged. The jaundice had been severe and he was diagnosed as having mild cerebral palsy. What a blow it was ! The Doctor suggested early physiotherapy at the age of eleven months.
By the age of two years, Kwasi was walking but not really well. By three he began speaking but not clearly. My mentor Mrs. Lydia Bedwei (Farida’s mum) asked me to let him attend a normal school. You bet I did. For 10 years it was constant physiotherapy at 37, three times a week. I am grateful to his father GYEBI for that determination and support.
Something wonderful about Kwasi was his determination and persistence. I prayed to God to help Kwasi and to give me strength and energy to help him . For five years, I fed him and bathed him. He was quite shaky in his movements and had quite a bit of spasm. He fell constantly anytime he attempted running but he always got up with a smile and would say “ I ‘m aweright (alright)”.
In between there were checks with Dr. Badoe as well.
IMPROVEMENT OVER THE YEARS
He began to improve as he joined regular school. He did not think his disability to do things right was an issue. He had confidence and he reassured me it would be well. And well it was.
I lost my second son at two months but the third one survived. His name is Kojo and he has been of tremendous help to his older brother. He is able to dress himself, take a bath and even feed himself. He is able to express himself well and can share a problem he has with you.
LIFE AT SCHOOL
It had not been easy with him in a regular school but I believe the Lord heard my prayer many years ago and gave me that energy and confidence. I pushed the teachers at his school to understand and accommodate him. I also told him that he could do it and he is doing it. It was not easy for the teachers to deal with a child of his caliber but I encouraged them and urged them on. It’s easier now he is in year 6. He is able to defend himself and know right from wrong.
His ability to communicate his thoughts to paper has been his challenge. He stores information and remembers date like a computer but the School has been most helpful in his written examination. He does extremely well in ICT, History and Geography and Languages sometimes. He gets easily frustrated when things do not go the way he wants but he understands when it is explained to him.
Sometimes he could be clumsy in handling items and not very precise when wearing shirts with buttons and tying laces .
WHO IS KWASI
Kwasi is an intelligent 13 year old young man whom I am terribly proud of. He is in his final year grade 6. He is determined and very keen on sports especially football. His speech could be better but you will not believe that Kwasi can run up and down the stairs unaided. He thinks very clearly and reasons quite well even above some of his peers. He asks intelligent question and has a strange premonition of events to occur. He is respectful and a thoughtful child. I am doing all I can to make sure he gets a good education and I am so hopeful that he is going to be a GREAT person one day.
To God be the glory for giving me a son like KWASI.
My promise to GOD is to encourage parents who have given up. I have and will not give up because KWASI has proven to me he can do it.
February 28th, 2013 · 7 Comments
By Lara Cookey, Accra, Feb 2013
When I became unable to sit up for more than a few minutes at a time, and the most basic tasks became difficult, I found myself bed ridden, and needing help with so many things. I had profound muscle weakness, and realised with slow clarity that I was now disabled. My symptoms were mild and sporadic at first, spanning back some twenty five or more years, and now I can see the cause of some ‘episodes’ in my teenage years. I am fortunate to have got a diagnosis some five years ago, and was told the culprit is an ‘auto-immune’ condition. A situation whereby one’s own body goes ahead and wages a war against itself. I discovered that each individual is unique in how the effects of this self-body-war takes place. There are all kinds of names for this underlying auto-immune anomaly-Multiple Sclerosis, Diabetes, Rheumatoid arthritis, to name a few that most people have heard of, but my assailant is called Myasthenia Gravis.
When I was diagnosed, I started to search for support groups in Ghana, indeed I wrote to the Myasthenia Gravis Association in England, and also the Association in Australia by email, in my bid to get together with other people living with this condition. Both groups regretted they could not offer much support beyond my joining their online forums. Their websites had a lot of information that assisted me greatly in understanding, and coming to a place of successful management of my condition.
I heard about Sharecare Ghana through a friend and visited their website. One thing led to another, and I began to attend meetings.
It has been a great journey for me, since the early days. It was so valuable to my psychological well being to meet other people with similar stories, and varying degrees of disability. I understood better than ever before what it means to be disabled, and that is not just my own personal experience, I was enriched to hear other people’s account of their experience..
Sharecare Ghana has become more than a support group for me, I have been given the opportunity to contribute my effort to the support of needy children with neurological conditions. I have become bolder in advocacy for the disabled, and people living with neurological conditions. Apart from that, I now have a group of new friends who look out for me, and I look out for them. People living with disability can be the most resilient, positive minded people you will ever meet.
I have now returned to full mobility after several years of management through medications and physiotherapy. With many of these conditions, medication alone is not enough. If there is anything I would say was of great need apart from medications, it is physiotherapy and psychological counselling. Learning to accept my condition was greatly enhanced by my interactions with Sharecare Ghana
I doff my hat to the founder Nana Yaa, whom we all fondly call NY. Do not be fooled by the outward appearance of this diminutive looking lady, walking with a frame. She is a passionate, and strong advocate with a bold vision to reach out to others in a similar predicament as herself. Her drive and enthusiasm in the face of her many challenges has been an inspiration to me. On the occasion of the fifth anniversary of Sharecare Ghana, I send many congratulations, and gratitude on behalf of those who have received support in one form or another. I applaud this effort to reach those who have been forgotten. This means by which a voice is given to those who suffer various challenges, silently. NY is our unsung hero, and we are all grateful to God for her life.
Sharecare is searching for other patients’ organizations to initiate discussions on a national network of patients’ organizations and inform them of the benefits of joining the International Alliance of Patients’ Organizations (IAPO).
WHAT IS IAPO?
The origins of IAPO lie in healthcare conferences from 1994 to 1996 at which patient group representatives met and realized that regardless of their disease area they faced common healthcare issues, such as access to information and patients’ rights. With further discussion with stakeholders it was officially registered as a not-for-profit foundation in The Netherlands.
IAPO has over 200 members spanning over 50 countries and 50 disease areas and through membership representation of an estimated 365 million. It is a unique global alliance promoting patient-centered healthcare around the world.
IAPO’s Vision: IAPO’s vision is that patients throughout the world are at the centre of healthcare.
IAPO’s Mission: IAPO’s mission is to help build patient centred healthcare in every country.
Objective of Mission:
- Realizing active partnerships with patients’ organizations and maximizing their impact through capacity building
- Advocating internationally with a strong patients’ voice on relevant aspects of healthcare policy, with the aim of
- Influencing international, regional and national health agendas and policie
- Building cross-sector alliances and working collaboratively with like-minded medical and health professionals, policy makers, academics, researchers and industry representatives.
Membership: The members are the most important aspect of the International Alliance of Patients’ Organizations – these are the groups who are working to support patients around the world and to promote patient-centred healthcare in their own country or region.
WHAT IS PATIENT-CENTRED HEALTHCARE?
According to IAPO’s Declaration on Patient-centred healthcare, health systems all over the world are under pressure and cannot cope if they continue to focus on diseases rather than patients; they require the involvement of individual patients who adhere to their treatments, make behavioural changes and self-manage. Patient-centred healthcare may be the most cost-effective way to improve health outcomes for patients.
IAPO believes healthcare must be based on the principles of respect, choice, patient involvement in health policy, access and support and information.
AFRICAN REGIONAL STRATEGY
In 2010 IAPO defined its Regional Strategy which aims to create regional networks, develop the capacity of patients’ organizations in each region and enable regional networks of patients’ organizations to communicate a strong and unified voice on shared agendas.
In relation to this objective, the overarching objectives for the Africa Regional Strategy are to:
a) Bring together patient groups from across the region in an active and empowered network
b) Develop the capacity of patients’ organizations in the Africa region
c) Enable patients’ organizations in Africa to communicate a strong unified voice on shared agendas.
Sharecare believes that the formation of a national network is the first step towards carrying out this strategy. We are therefore asking other patients’ organizations in Ghana to join us in the discussions for a national network of patients’ organizations
We would appreciate it if interested organizations could contact us by emailing firstname.lastname@example.org for further discussions.
By Joycelyn Oklu, Intern
Mephbosheth Training Center is a school that supports children with special needs. It is located in Ankamu near Apam junction in the Central Region of Ghana.
As part of annual activities of the center, students from the University of Southern California visit the school every first week in March to deliver week long services (such as physiotherapy, speech therapy, assessment, counseling, as well as provision of assistive devices) forchildren, parents and the general public.
Sharecare members visited the center on 9th March 2012, with twelve Sharecare children, their parents and a psychologist.
The children were assessed and treated based on their individual needs. The services provided to them included physiotherapy and speech therapy.
De-Lawrence Lamptey, clinical psychologist also assessed the children and at the same time counselled the parents, asking them to care for and accept their children`s situation.
At the end, eight of the children were given special shoes to be used to correct deformities and straighten their legs and feet, one was given a walker and one was offered admission into the school.
The visit was a joyous and successful one. The parents’ commitment and children’s comportment was excellent and everyone was grateful.
January 25th, 2012 · 1 Comment
Distractions as an agenda, that is what I call the long list of health issues that I have lived through.
Distractions. They appear to impede the progress of my life, but I know that this is not so. In fact, there is a purpose to these enforced detours. This is my conclusion since I was not party to how God put me together; the particular combinations that make up my DNA, nor have I been privy to my set of life’s issues. I have been brought here to be trained up by them since most of these things have been arranged without my contribution, I assume they are part of God’s plan to bring about inspirational change. I know that saying debilitating health challenges are for building up character, is counter intuitive, but God does not work in ways that we do.
My further assumption is that He is working on me to build strong faith by keeping my eyes focussed on him. My own strength could never have measured up to face them. I have been able to endure only because I have looked beyond myself to my maker for sustenance and strength.
I sincerely believe God was not mistaken in how he put me together. He knew exactly what he was doing when he ‘knit me together in my mother’s womb’. He knew exactly who my parents would be and he said he made me ‘fearfully and wonderfully’. He also knew who my siblings, husband, children and relatives would be, and added to that formidable force of supporters, a veritable army of friends and well wishers. The combined prayers of these who have been carefully and fearfully scripted into my life, are a testimony to the magnitude of heavenly power.
So mine is to praise Him from my in most being, and continue to live out the purpose of my life. At a minimum, our purpose is to praise Him as is demonstrated in this scripture I stumbled on Isaiah 43:21 ‘This people I have formed for Myself;
They shall declare my praise.’
With every hindrance, my determination to bring praise to God’s name becomes stronger . I become more and more able to trust in the God of all grace, and what He is able to do through me.
Then there is the role that fear plays. God said ‘fearing’ Him is the beginning of wisdom. From this I deduce that there are God intended ways in which fear is to be utilised. Sometimes I am aware that fear can be used to leverage the release of possibilities that are beyond myself. Mostly fear makes me ‘afraid.’ Yes, in the natural, but beyond that, it is a trigger. Fear draws my attention to an opportunity to shift paradigms, by seeking an opposite or other alternative instead. Such transformation, allows me to transcend my human instincts and apprehend something else. Something deeper, and definitely beyond myself. Something which I think is God himself. A very simple expression of His love, in allowing me this privilege.
So, to read about being fearfully and wonderfully made as written by the psalmist, brings to focus this immeasurable love of God in Christ Jesus. This love that says… I care so much about my creation, I have taken great care in putting it together. On this I depend, regardless of what has happened.
21 Jan 2012
Support for Children with Cerebral Palsy
You can download the flyer here: need-support-cerebral-palsy-children-flyer
Tags: Ghana · Health · Health, Life, Care, Illness, Living · Life · Living · wellness
Members of Sharecare Ghana today joined the youth service at Accra Ridge Church to talk about autoimmune and neurological conditions and how people can make a difference to the lives of persons with disabilities through sensitive behaviour and attitude.
The theme of the youth for the year was “Do you know God?” and Sharecare’s ‘take’ was to see God’s hand in every situation and use it positively (or to the best of your ability).
Thank you Ridge youth for inviting us and for your donation.
Thank you also to students of Trinity College who invited us to address them last month and gave us a donation.
God bless you all
The Accra Mail, Thursday 8th December, 2011
The Noguchi Memorial Institute for Medical Research (NMIMR), in collaboration with physicians at the Department of Internal Medicine, Korle Bu Teaching Hospital and Sharecare Ghana, is carrying out a research into autoimmune disease conditions.
The research, which is at the instance of Sharecare Ghana, a registered NGO and support group for people with rare immuno-neurological conditions that include autoimmune diseases and diseases of the central nervous system, is being pre-financed by Ghana Commercial Bank and ProvidentLife Assurance Company Limited.
The main aim of the study is to document the experiences of diagnosed autoimmune disease sufferers and their physicians to better understand the occurrence and management of autoimmune disease conditions. It will involve in-depth key informant interviews with patients and physicians involved in their care and treatment. In all a minimum of 40 patients and 10 physicians are envisaged to be included in the study.
It would be recalled that Sharecare Ghana in 2007 approached the Noguchi Memorial Institute for Medical Research with an enquiry as to whether the Institute was involved in research into why autoimmune conditions and diseases of the central nervous system are on the increase and whether it will consider carrying out such a research, if the Institute had not carried out any such research. A special interest was expressed in the role of nutrition and diet and their effect on these conditions. Though autoimmune diseases research was not one of the institute’s research areas at the time, there was sufficient interest to warrant a consideration of this patient-led initiative
Autoimmune diseases (ADs) represent a heterogeneous family of chronic, disabling diseases with varying natural histories and a wide range of clinical symptoms. ADs share underlying defects in the immune response resulting in the body attacking its own organs, tissues and cells thus causing serious damage in the process. Predisposing or risk factors associated with the onset and progression of AD include heredity, certain environmental agents including metals, chemicals (drugs, pesticides etc.) dietary elements and microbiological agents. More than 80 individual ADs have been identified with about 75% of those affected being women.
ADs have hitherto been thought to be rare diseases among Africans but indications are that their incidence is now increasing and may soon pose a significant public health problem. In Ghana, significant numbers of ADs are now being diagnosed but unfortunately there is very little documented evidence on the situation.
It is hoped that the study will generate information that will help identify ADs that are of public- health priority in Ghana in terms of prevalence.
Here are some of the children. Truly there are many Little Johns out there…
Ruth - 3 years - doesn't walk or talk
Ernest - 8 years - does not talk
Nii Daeko - 3 year- doesn't walk or talk