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WORLD CEREBRAL PALSY DAY 2017  Sharecare Ghana calls for early diagnosis and early intervention for children with Cerebral Palsy

October 6th, 2017 · No Comments

Today is being observed throughout the world as World Cerebral Palsy Day. In Ghana, the theme is: “We move together: Inclusion now”. Sharecare Ghana with funding from the Local Development Fund of Ghana Federation of Disability Organisations (GFD) carried out research on its members with Cerebral Palsy and their parents with the purpose of advocating for the rights of children with Cerebral Palsy and their parents/care-givers.

Sharecare Ghana hopes the preliminary research report (published below) will generate further research and attention from the government.

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The relation between the quality of care given to a mother during labour and delivery, and the possibility of her child developing Cerebral Palsy or another disability, continues to be a debate between parents and health professionals.

As to whether this debate should continue, or whether there should be finger pointing, Sharecare Ghana in the spirit of World Cerebral Palsy Day believes the best option for parents-to-be, is to heed the instructions of the medical professionals, but also be courages enough to ask questions of the professionals and demand information, with the goal of reducing the chances of children born with Cerebral Palsy.

What is Cerebral Palsy?

Cerebral Palsy is a neurological disorder caused by a non-progressive brain injury or malformation that occurs while the child’s brain is developing.

“Cerebral Palsy is a disorder of motor function and posture. It is a chronic motor disability; when I say motor disability I mean the ability of the child to move his or her muscles and how that child is able to maintain posture i.e. to sit and stand”, Dr. Antwi of the La General Hospital explained.

The word “cerebral” refers to the brain’s cerebrum, which is the part of the brain that regulates motor function. “palsy” describes the paralysis of voluntary movement in certain parts of the body. 

Cerebral Palsy primarily affects body movements and muscle coordination.

Worldwide findings on Cerebral Palsy.

Population based studies from around the world report prevalence estimates of Cerebral Palsy ranging from 1.5 to more than 4 per 1000 live births or children of a defined age range. About 1 in 323 children has been identified with Cerebral Palsy according to estimates from CDC’s (Centers for Disease Control and Prevention) Autism and Developmental Disabilities Monitoring (ADDM) Network.

Sharecare Ghana, in the course of compiling a register of people with autoimmune and neurological conditions in 2011 in Accra, found a large concentration of children with disabilities in Osu a suburb of the capital Accra, most of them from very deprived backgrounds. 

For this reason, and because facilities available for recommended therapies were not accessible to them, Sharecare Ghana set up a centre for children with neurological conditions in Osu-Anorhor. After assessment the majority were diagnosed with Cerebral Palsy. The centre provides physiotherapy, speech therapy and education placement for children with disabilities that are able to attend school, and counseling for the parents.

The centre now has over 50 children and an increasing number of parents trooping in for help, and this is beginning to overstretch the already burdened small facility. It begs the following questions: why are there so many cases of Cerebral Palsy in that community; who is researching the medical causes; what is being done to prevent it: what is society doing for the children and their parents; and what should the government’s responsibility be in all this?

Sharecare Ghana remains steadfast in its objective of providing accessible health care services to these children with Cerebral Palsy and other disabilities as it also seeks to acquire a new and bigger space for better services.

Experiences of Sharecare parents

For the purpose of research, not to find fault, Sharecare parents were asked what they thought had caused their child’s condition. It is no surprise that most of them blame the midwives or nurses, for they indeed are the first contact with the outside world. 

Parents of 18 year old Richard said he was born with Cerebral Palsy because delivery was delayed for 24 hours.

“A day after going into labour, the head of the child showed up, and there was a lot of fluid that came out. They had to help the mother by pushing her belly, and all this while there was bleeding also”.

After realising that Richard’s skin colour was not normal, his mother alerted the midwife and was told to give him glucose, which she did, but there was no change in his condition. Hospital visits became their routine in search for a cure for little Richard.

Another member of Sharecare Ghana and a mother shared the story of her son, now six years old. Ebenezer’s birth was not without drama. “I gave birth to Ebenezer on the floor because when I felt the baby coming I immediately called for the nurses, but they told me it is not yet time for me to deliver. I brought forth moments after the nurses refused to attend to me.”

These are just two cases but the other mothers narrate similar experiences that call for further research. According to them, they did not receive good care. 

What could be the problem? Could it be negligence or lack of professionalism on the part of the nurses and midwives or is it that the mothers for some reason are not adhering to the directives issued them before and after delivery.

At the point of delivery is Cerebral Palsy or another disability diagnosed? What equipment do hospitals and clinics have for early diagnosis? What information are parents given to manage children with Cerebral Palsy and other disabilities. And how early are management interventions started?

At the Sharecare Rehabilitation Centre, assistive devices such as sitting frames and corner seats are used for the children’s therapy from six months of age, because between 4 and 6 (sometimes 7) months babies should have attained the ability to sit independently. This aids the child to sit and not lie down for a long period of time. Standings frames are used when the child is 10 months old, which helps in pelvic stability to strengthen the muscles. Other devices such as gaiters, air splints and wrist splints are used to develop the movement of children with Cerebral Palsy.

The key issues here are prevention, early diagnosis and early intervention, and as we observe World Cerebral Palsy Day, Sharecare Ghana would like the government and health professions to give these issues more attention to make all Ghanaian children useful and relevant to our society.
Sharecare Ghana is an association of persons with autoimmune and neurological conditions, including families and care-givers.

Write up by Adwoa Adu and Christopher Agbega, Sharecare Ghana, and facilitated by the Local Development Fund of Ghana Federation of Disability Organisations (GFD). For more information, please contact sharecare4u@gmail.com

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Another day of fun at Mmofra Park

August 23rd, 2017 · No Comments

The Parents Support Group has made a request to go to Mmofra Park once a month for aerobic exercises. This was after another day of fun and relaxation on July 7th.

Thank you Mmofra Foundation!

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“Let us fight the exclusion of PWDs from the radar of livelihood”

July 12th, 2017 · 9 Comments

In a country where persons with disabilities are not fully accepted as part of the community in which they reside, they are often left out of education on sexual reproductive health and family planning. The thought here is that once they are disabled, their sexual life or reproductive health is equally disabled.

At a recent workshop at the La Palm Hotel in Accra the capital city of Ghana, organised by the United Nations Population Fund (UNFPA) in collaboration with the Ghana Federation of Disability Organisations (GFD), I together with members of other organizations and institutions such as the Ministry of Health discussed ways of improving access to sexual reproductive health/family planning information and services for persons with disabilities.

A general look at the statistics in the country indicates that 10% of the Ghanaian population is made up of persons with disabilities and the literacy rate among these PWDs is not more than 3%.

I visited the clinic when I was pregnant with my fourth child. The nurses said very hurtful things to me. They said I was giving birth like a dog. They said they pitied the men who introduced me to sex because I was no longer able to control my sexual feeling. I will never go back to that clinic 33 year old mother with a physical disability.>>  Quote from Rugoho and Maphosa, 2017.

I went to look for family planning methods at the clinic and the nurses told me sex was not meant for the disabled, hence there was no need for me to get contraceptive methods“… 29 year old pre-school teacher with a physical disability.>> Quote from Rugoho and Maphosa, 2017.

These are comments levelled against PWDs all over the world when they visit the clinic to access sexual reproductive health education and family planning methods. Unfortunately, women with disabilities are more likely to suffer sexual, emotional and physical abuse (Groce et al 2009) due to their vulnerability as a result of their disabilities… (Rugoho and Maphosa, 2015)

Participants at the workshop were divided into six groups representing the six health system building blocks, according to the World Health Organisation (W.H.O). The objective was to discuss the challenges faced by PWDs in accessing sexual reproductive health and family planning, find out the key drivers to these challenges and bring out solutions to them.

The W.H.O health system building blocks are:

– Service delivery.

– Health workforce.

– Information and research.

– Medical products and technologies.

– Health care financing.

– Leadership and governance.

Challenges raised by the groups included the perception that PWDs are non-sexual, negative service provider attitudes towards PWDs and the wrong notion that PWDs will give birth to their kind and so should be discouraged from participating in sexual activities and reproduction. A research finding by “Holness” in 2013 revealed that women in some countries including some in Africa are forced to undergo sterilization. The policy and legal framework is inadequate to ensure the kind of access envisaged under the UNCRPD and to some extent the Ghana Disability Law  (Act 715, 2006). It is also key to note that the legal framework to aid physical access of PWDs to facilities such as hospitals, clinics and other health centres in Ghana is not fully implemented.

Some of the proposed solutions include the rigid enforcement of the provision of the national Disability Law on access to PWDs to public places and buildings, review of the law, and spell out specific rights to PWDs to sexual reproductive health and family planning with proper guidelines for implementation with accompanying legislative instruments. Also suggested was to create social media platforms for PWDs for effective sexual reproductive health and family planning information as well as service delivery.

Health training institutions should integrate special courses on dealing with PWDs (including the use of sign language) and attitudinal changes regarding PWDs and SRH/FP Service delivery.

Did you know that in 1941 the 37 Military Hospital was built to serve PWDs only? Did you know that after four years it was turned into a general hospital? This was even before Ghana gained independence. Can you imagine the level of success the nation would have achieved if we had built on what was started more than 7 decades ago?

Let us fight the exclusion of PWDs from the radar of livelihood. Let us take off from this point in our discussions, refusing to re-visit these issues but making sure that we address what needs to be addressed and implement what needs to be implemented or else we will keep going around in circles as we have been doing in the last seven decades.

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IMG-20170210-WA0004(1) Christopher Agbega is an ambitious young man living above his physical disability with the hope of making his country Ghana and the world a better place for persons with disabilities. A member of Sharecare Ghana and an advocate for persons with auto-immune and neurological conditions, Chris is also a hip-hop artiste, a song writer, radio presenter and a social media marketer.

 

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Support Group Meeting 24/3/17

March 26th, 2017 · No Comments

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We had two guest speakers on Saturday. Emefa Xorse Attiega spoke on nutrition and blood group diets, and Mabel Selby, of Axioma Read Self-Reliance Foundation, spoke on training and job placement for persons with disability. Both topics were well received and members requested follow-ups from the two speakers.

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Nadiyah’s healing touch!

March 11th, 2017 · No Comments

Sharecare children are grateful to Nadiyah for volunteering her time. Her therapy has been useful. Thanks Nadiyah.

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R.I.P. Pearl Ama Otoo

February 7th, 2017 · 1 Comment

IMG_3727By Nana Yaa

I first met Pearl on June 30th 2013, which was the 5th anniversary of Sharecare Ghana. Dr. Akpalu introduced her to me as my ‘new patient’ because he knew I would tell her when not to listen to him – he calls me his most stubborn patient.

Pearl and I hit it off and started talking on a regular basis about our challenges with multiple sclerosis and options that could make us feel better.

She was a very determined person; determined to complete her university education even though she had practically lost her sight and had frequent relapses.

She called me one day last year to tell me she had graduated. She was so happy; her smile came through the phone. And I was really happy for her. She told me she wanted wider experience with the disability community and so would not do her national service at Sharecare, but with Ghana Federation of Disability Organizations, which I absolutely understood. But I told her she would still have to do some work with Sharecare even if she was somewhere else. She started going for physiotherapy, she started her diaper business, she started her national service and she was about to start her diet on the day she passed…

I don’t know if some people know when they are about to  die.  Pearl Ama Otoo was so full of life; and she insisted on the Ama in her name. When she called me perhaps two days before she passed, her voice was very small. Nana Yaa what can I take for the pain? I had no answer… You have to tell doctor.

This cruel disease has robbed us of such a gentle yet determined  person. Pearl Ama Otoo, you have taken the lead and we are told to give thanks to God in all things. It is so hard, but we give Him thanks for lending you to us. Rest in peace, Pearl, till we meet again.

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Party for Sharecare children

January 4th, 2017 · No Comments

Thank you Faustie and sisters for giving us such a good time on Monday 2nd January! Happy New Year to you too.

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Healthline Herbal and Nutritional Centre

January 2nd, 2017 · No Comments

Manageable Illnesses/diseases are:

Rheumatoid arthritis,

Multiple sclerosis,

Fibroids,

Arthritis,

General well-being.

Call 0502 708 554 and book an appointment.

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At Kinder Paradise

December 30th, 2016 · No Comments

We thoroughly enjoyed our day out at Kinder Paradise. Many thanks to the proprietor, staff and students and we look forward to coming again… God bless you all!

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What did Father Christmas give us?

December 30th, 2016 · No Comments

A cheque of Gh¢500 from Kingsley and Karen Nyarko of Batsona Total through Father Christmas. Thank you Ekow and God bless you!

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