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Today is Patient Solidarity Day 2018

December 7th, 2018 · 3 Comments

Sharecar Ghana releases online survey report in partnership with International Alliance of Patients’ Organizations  

Today is being observed across the globe as Patient Solidarity Day. This year, the International Alliance of Patient Organizations (IAPO) members, patients, healthcare organizations, policy-makers, academia, institutions, industry and other stakeholders are calling for safe  medications and healthcare for all. Patient Safety is a critical global public health issue, which plays a crucial role in enabling and supporting health systems achieve sustainable and effective Universal Health Coverage (UHC) – one of the Sustainable Development Goals (SDGs).

Every patient has a right to receive medication and healthcare that are safe, effective, and legitimate. Chance should not be a factor in whether or not one receives safe healthcare and quality medicines.

In the run up to Patient Solidarity Day (PSD) 2018, Sharecare Ghana in partnership with IAPO embarked on an online survey to engage the general public on its knowledge of autoimmune and neurological conditions and to also champion the cause of the ‘fight the fakes’ campaign against fake medications in the system.

This survey was conducted from 23rd November 2018 to 3rd December 2018 (10 day survey). The questionnaire was shared via bulk email, WhatsApp and on Sharecare Ghana’s social media platforms.

The survey was divided into two parts. The first part dealt with autoimmune and neurological conditions knowledge and prevalence, while the second part dealt with awareness of fake drugs and their danger.

Bio Data

Respondents were all Ghanaian; 65% were female and 35% male. The age range was as follows: 5% between 13-19 years, 25% between 20-29 years, 30% between 30-39years, 5% between 40-49years, 15% between 50-59 years and 20% over 60 year. Respondents were from three out of the 10 regions in Ghana, with 90% from the Greater Accra Region, 5% from the Eastern Region and 5% from the Central Region.

Awareness of Autoimmune and Neurological conditions

Data gathered from this section revealed that 35% of rrespondents have an autoimmune / neurological condition, 25% are friends of persons with autoimmune / neurological conditions, 10% are caregivers and 30% are relatives of persons with autoimmune / neurological conditions. With the conditions known to these persons 30% had knowledge of Rhematoid Arthritis and Spondylosis, 25% knew Muscular Dystrophy, Lupus and Type 1 Diabetes, 10% knew of Motor Sensory Neuropathy  and Thyriod conditions ,Vasculitis, Neuromyelitis optica (Devic’s Syndrome), Multiple Sclerosis, Morfan each had 5%.  75% of patients have had their conditions diagnosed and 25% have not been diagnosed.  65% said their condition is being managed with diet, 60% by medication and 55% by physiotherapy. One participant says: “I do things that keep me calm and I eat right”.

As to  whether respondents belong to an organization or support group, 75% said yes while 25% said they do not belong to an organization or suppoprt group. A follow up question revealed that 70.6% of respondents  are members of patient support groups and 29.6% are volunteers.

Respondents were given a list of issues to select which do not currently receive the attention they deserve from national decision makers.

The implementation of existing laws on diseases and disabilities by the authorities had 75%,

80% for increasing availability, access and funding for early diagnosis,
75% for improving access to treatment (availability),
85% for lowering cost of treatment (affordability),
55% for improving access to new treatment options and clinical trials,
65% for training health care providers,
20% for addressing end of life concerns and palliative care,
45% for improving access to psychological care,
50% for providing integrated care (combined medical, psychological, and social support),
30% for offering disease management education and counselling for self-care skills,
30% for the creation of standards and guidelines to link clinical and community support programs.

Awareness of counterfeit drugs and their danger

This section started by asking  10respondents what instinctively comes to mind when they hear the word counterfeit or counterfeiting. 60% said money, 30% medicine, and 10% said electronics. Moving on, 85% knew about the existence of counterfeit medications and 15% did not. 5% could identify counterfeit drugs, 60% could not and 35% had no idea what counterfeit drugs are.

40% do not have information about being exposed to counterfeit drugs, 30% have little information and 30% have some information about being exposed to counterfeit drugs.

95% of those who took the survey believe counterfeit drugs are definitely dangerous and 5% said they can be dangerous.

It is no surprise that 55% of respondents believe counterfeit drugs can be encountered when travelling as tackling  this has been an ongoing challenge for the Food and Drugs Authority. 15% of respondents said they could encounter counterfeit drugs via official distribution, 15% from other services, 10% online and 5% had no idea. 65% think that there may be counterfeit drugs but are not sure, 20% believe there are undoubtedly counterfeit medicines and everyone knows it, while 15% do not know. 95% have never contacted the authorities on counterfeit drugs while only 5% have.

If any conclusions may be drawn from the data, the survey clearly reveals that there is a fair idea of knowledge about autoimmune / neurological conditions as well as the existence of counterfeit drugs and their danger. Sharecare Ghana wishes everyone a happy Patient Solidarity Day celebration, a Merry Christmas and a Happy New Year in advance.

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Patient Solidarity Day 2018

November 24th, 2018 · No Comments

As part of the celebration of Patient Solidarity Day (PSD) on the 7th of December 2018 this survey has been developed to create awareness of autoimmune/neurological conditions as well as the existence of fake drugs in our system. This survey will take not more than 3 minutes of your time and your responses will make all the difference.

Thank you.

 

Please click HERE.

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We are making our physio equipment with cardboard

October 15th, 2018 · 1 Comment

Sharecare Ghana has begun a project titled: Physio Equipment Production and Training for Mothers. Mothers of Sharecare children are learning to produce their children’s physiotherapy devices using paper technology.

The project is sponsored by EurHope.

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Sharecare mothers start producing liquid soap

October 15th, 2018 · 1 Comment

It’s nice to see that our mothers have been trained to make liquid soap. This goes a long way to cater for themselves and their families as they will be able to create businesses and earn money for themselves with the skills acquired. This project is sponsored by Ghanaman CRG Trust Fund.

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2nd CP Awareness Campaign launched

October 8th, 2018 · No Comments

The 2nd Cerebral Palsy Awareness Campaign was launched on World CP Day (6th October) at the Prince Emmanuel SDA Church in Ringway Estates, under the theme “Celebratlng and Creating Powerful Voices for People with Cerebral Palsy”.

Dr. Abena Tannor from Komfo Anokye Teaching Hospital gave a comprehensive presentation on the prevention and management of Cerebral Palsy. She explained the causes, signs and symptoms, effects, rehabilitation and  the role every Ghanaian should be playing.

She said:
Cerebral Palsy is a one time damage to the brain;
It cannot be cured but it can be managed;
Rehabilitation is very important;
Simple adaptive devices can help.
She showed images of simple devices that can be made at home to help children with CP.  
Dr. Tannor said Ghanaians should get involved:
Speak out
Education – rights,  inclusion, stigmatization
Volunteer
Employ persons with disabilities and 
Raise/Donate funds.

Farida Bedwei, a software engineer shared her experiences as an adult with  Cerebral Palsy in Ghana. She said her mates in primary school were very helpful because they had not learned to discriminate. She reminded people to ask how to assist a PWD rather than assume that they know.

Suzzy Darko of the Special Mothers Project recounted how her family had tried to cure her daughter of Cerebral Palsy and had given up on her because she would not go along with their methods.

Nii Anyetei Akogyeram founder of Cerebral Palsy Awareness Ghana launched the campaign.

 

 

 

 

 

 

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Karmzah is here!!!

October 7th, 2018 · 1 Comment

 

 

 

 

 

 

 

There is limited representation of children and adults with disabilities in the comics and cartoons. Some characters in Marvel’s X-Men have disabilities, e.g. Professor X is in a wheelchair and Cyclops is visually impaired; then there’s Misty Knight, an amputee with a bionic arm.

Considering the number of children and adults with varying disabilities worldwide there needs to be  a lot more characters they can relate to in the world of animation. According to statistics, Cerebral Palsy is the largest cause of childhood disability and there is no superhero or superheroine with Cerebral Palsy for children to identify with.  Having a superhero(ine) with such a condition would provoke more conversations about neurological conditions and lead to a broader acceptance into society as a whole.

Persons with disabilities are, most often than not, portrayed as helpless victims who need to be rescued or helped by their able-bodied counterparts. The focus is on their disabilities, not their capabilities. That perception will only change when we start focusing on their strengths, not their weaknesses.

With the introduction of a superheroine who, in spite of having Cerebral Palsy, fights bad guys and does the rescuing, we’ll be changing the narrative and making it seem, at the very least, not that big a deal having a physical disability. The character – Karmzah, still uses her walking aids, and is empowered through them. If she loses ahold of her crutches, she reverts to her ordinary self and can no longer fight, run or fly as she does with the superpowers.

The idea is to make the aids (wheelchairs, walking aids, hearing aids, etc) ‘cool’. If there are crutches that unleash whips and darts, and braces which allow the wearer to run superfast, it makes it more appealing to the average child or teen who has to wear or use them to get around.

Karmzah, jointly produced by Farida Bedwei and Leti Arts, was launched on World CP Day (October 6). Look out for a link to the app…

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“We are tired of well structured speeches and sweet words”, Christopher Agbega says

October 6th, 2018 · No Comments

The Ghana high level meeting on non-communicable diseases (NCDs) came off on 7th August 2018 at the Council for Scientific and Industrial Research (CSIR), Accra, Ghana. In attendance was the Minister of Planning and chair of inter-ministerial committee: implementation of the UN SDGs, Dr. Eugene Owusu, Special advisor to the President on SDGs; Dr. Kyei-Faried, Director, Disease Control and Prevention and tobacco control focal person Ghana Health Service, as well as other ministerial executives, member civil society organizations and the media.

Non-communicable diseases affect people. People everywhere in every country, rich and poor, old and young, in cities and in villages, the privileged and the vulnerable. Every year, over 40 million people die because of NCDs. However many lives can be saved if action is taken now. It is unacceptable that millions still live in environments that promote disease over health, that millions everyday are denied access to life-saving treatment and care, and that millions are denied dignity and their human right to live long and healthy lives.

Presentations were made on scaling up national action for the prevention and control of NCDs in Ghana, why the SDGs matter, and the imperative of addressing NCDs, and advancing NCD response from CSOs perspective. There was also a keynote address from the Minister of Health delivered by his representative.

Christopher Agbega, volunteer advocacy officer for Sharecare Ghana made a two minute intervention touching on personal experiences and strides made by countries like India to combat the surge of NCDs.

“We are on the brink of a major upset; one that will halt the progress of the entire nation. One that will reach the very core of our minds and leave us thinking: What did we miss? What did we overlook? In our quest for growth and development, did we care to investigate the kinds of products we were allowing into our country and unto our markets? To the FDA and regulatory authorities, we know you exist, but we can’t help but wonder…”, he said

He concluded by stating clearly that the NCD community has had enough of “well structured speeches” and sweet words.

“We need your commitments and interventions. We need your participation in all NCD related activities. Above all we need the meaningful involvement of PLWNCDs at the helm of affairs to adopt smart fiscal policies that promote health, boost NCD investment, step up action on child related health issues such as Cerebral Palsy and Obesity and save lives through equitable access to NCD treatment”.

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Ghanaians urged to “go Green” on World CP Day

October 4th, 2018 · No Comments

By Ghana’s Special Mothers Project

The Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy issues in Ghana is calling on Ghanaians to wear something with a touch of green on Saturday 6th October

A statement issued and signed by Mrs Hannah Awadzi, Executive Director of the Special Mothers Project said  Ghana will join the rest of the world to celebrate World Cerebral Palsy Day, a day set aside to celebrate people with cerebral palsy and their care-givers.

World Cerebral Palsy (CP) Day marked on the 6th of October every year is also used to express pride in the lives and achievements of those with CP and the people and organizations that support them.

The colour green symbolizes “Hope”; wearing green will help highlight issues affecting people with cerebral palsy in Ghana and beyond.

Mrs. Awadzi said the Special Mothers Project as a way of creating awareness on cerebral palsy will be distributing information leaflets to people on that day.

This year, a number of organizations and individuals in Ghana are doing something in their own small way to mark the day.

Mrs. Awadzi said there is the need to create powerful voices for those with CP to change their world and connect organizations across the globe so they are better equipped to meet the needs of those with CP.

As a way of helping create solutions to everyday problems  of people living with cerebral palsy and also to act as a catalyst for social change and education campaigns that create solutions to universal challenges, the Special Mothers Project is organizing various training sessions for different stakeholders to enable more people understand cerebral palsy as a condition.

“There is going to be a series of special parenting summits to help empower parents of children with cerebral palsy while we engage the public to look at ways that everybody can be involved to enhance the lives of families raising children with cerebral palsy,” the statement said

World Cerebral Palsy Day celebration is a project coordinated by the World Cerebral Palsy Initiative, a group of non-profit cerebral palsy organizations with a global vision to create real change for people living with CP.
Cerebral Palsy is a neurological condition that affects movement and sometimes speech of children. It is the number one cause of disability in childhood.

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Robin at Sharecare Centre

August 5th, 2018 · No Comments

Robin an occupational therapist visited the Sharecare Rehab Centre last week and worked with Benedicta.  Thank you Robin. We appreciate your visit and hope to see you again.

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Professional life of a rare disease patient

June 17th, 2018 · No Comments

by Rachit Shah (name changed)

Deep realization somewhere shifts my focus implying ‘People see the DISEASE in you, before they see YOU.’ I often wished more people could have understood the invisible side, even some who seemed, really didn’t.

It’s a May 18 morning when I returned home after visiting my Neurologist in Jaipur. My so called big picture work legacy was being discussed and how this disorder took a toll on my profession by two of my cousins, Myra, a journalist and Aarav, a business owner.

For a moment I stopped and wondered, if it’s about me or by me??

I had worked for 12 years with well known investment banking institutions. The job of a Banker is always to deepen mystery but I always admired what I did. Economics is extremely useful as a form of employment, specifically for people dealing with money day in day out.

Not sure how, I recalled a funny incident where my ex-colleague had softly remarked, “you don’t have to be crazy to work here, we will make you one!!”

I couldn’t stop laughing as the episode played in my mind, leaving everyone wondering.

Minutes later, another cousin, Vihaan, an orthopedic doctor by profession, walked in with a wicked smile on his face seeming to know about the ongoing conversation and said “Rachit, I heard you’re gathering all the muscle, trying to get back to work”.

“Yes you’re right bro. I wish to start working from home initially till I realize my lost stamina knocking my door again,” I said.

Hearing that, my Mom appeared from nowhere and said, “The concept of working from home in India will take some time to evolve and currently is as rare as his disorder.”

My Mom had recently started to read a lot and mentioned something very informative.

“Convalescence”, she said.

It left us flabbergasted and she continued with a confident voice “though it’s a more realized and respected theory internationally, it’s the gradual return to health while you still need time to recover from illness or medical treatment, usually by resting.”

“Rachit is some-what going through this phase,” she added.

I was pleased to know that people around me are gathering all important information to educate each other and find solutions for my bailout.

It appeared that she had something on the rocks (lol) that day. “Anyone who has experienced a period of prolonged illness would need, ‘Support beyond the Pill.” As ‘Backward integration’ is expected to improve efficiencies and provide economies of scale, the theory of ‘Support beyond the Pill’ can improve and bridge gaps between the patient and his minute requirements to complete recovery,” she added.

Aarav seemed the most curious one among the lot as my Mom continued.

The Support System could include “adequate rare disease Insurance, compulsory Corporate Social Responsibility (CSR) initiatives, work from home facilities and a supportive Government who could simply stop and listen to what patients are telling them.”

Though all the mentioned points were food for thought, the most striking point for me was work from home facility.

“I am not sure about others but for me, working is a way to boost my morale during treatment. It’s an aid to accepting my new reality, become more communicative, constructive engagement of my mind and body, a complete ‘no’ to financial dependency and most importantly conquer daily goals and feel accomplished.

It was a hot afternoon, but no one wanted any breaks. The entire discussion seemed to have ignited fire under Aarav’s chair.

“What was the hardest thing to let go and your most difficult experience in this entire journey?”

“Sacrificing my Freedom”, I arrogantly said. From career to my favorite cuisine to skateboarding to walking long distances, there are many more in the list and the most difficult challenge can be described in two words: – Keeping Sanity. I thank God each day to have gifted me with enough stamina to deal, with all this (which is not vanity but a path to sanity).

My phone alarm rang indicating it was time for my daily dose of well- being. I took a couple of minutes break post my medication and didn’t realize when I fell asleep.

My eyes opened after almost an hour leaving me completely surprised finding two schools, to the discussion now. Everyone was stuck to their respective places.

Vihaan was waiting for me to rejoin and said “currently the most important consideration is health and nothing else should matter to you.”

This statement annoyed me more than I ever imagined.

“Oh really, Early Mornings reminds me of driving down to work with some soothing music, the office ambiance, the coffee aroma, meeting like-minded co-workers, social and behavioral reinforcements and having a disciplined approach, shouldn’t I be missing these things?”

“One of the side effects of this entire episode is being on the shelf not working full time anymore. Do you really know the costs involved and its future implications with no Government aid system?”

I feel lucky to have been considered to work from home by a well-known Real Estate company in Mumbai.

But Aarav was mentioning that “currently your energy and body pain levels have oscillatory pattern throwing enough surprises from time to time.”

Yes very much….. This reminds me of an interesting concept called ‘The Spoon Theory’ which states the difference between those with ‘limited energy reserves’ versus without. Healthy people typically won’t bother on the amount of energy expenditure versus a chronically ill person who has limited reserves to get through their day.

“It’s difficult at times,” I mumbled.

“How is it going with other patients with similar symptoms” asked Aarav.

Rare Disease patients are increasingly confronting their actual issues to find solutions for a better tomorrow.

This time it was Myra who asked in anticipation “what’s up with the Rare Disease portal that the Health Ministry of India is designing on your request”.

“Now that’s the question only a journalist could ask after waiting that long,” Aarav said with a smile.

“The work is in progress and being supervised by some of the best talents in India and should be up anytime soon.” I’m sure it would help patients pan world.

Have you spoken to doctors about this?

Most doctors who treat patients feel unsure how they could be involved in patient’s return to work.

What’s your primary reason to write?

It makes me feel sad to admit that humanity is turning into a very selfish game, trust me, not a single person except my family members came forward to do anything out of concern. Without naming anyone in specific I only heard from people with motives to use my writings and gather information.

My writings are just an initiative to raise awareness and share my experience with patients, their families and request authorities who could extend their hands to be a part of this social expedition.

To end this note:-
These are crazy times,
Seems waiting for recovery has become my pastime.
Get me some relief; the pain hits me quick,
But my intuition tells me it’s not here to stick.
Though sometimes I wonder, what’s happened to me now?
But I am sure to be Surfing someday in Macau
Though the toughest times seems to have passed,
Because my self determination didn’t let it last.
Currently, gradual return to work seems more viable,
As the day again has arrived to prove myself reliable.
The market graph leaves me craving and the economic charts make me high,
Those old days for sure had some eagerness to hit the Bull’s eye.
This is for the sake of old times, learning from ignorance and accumulating all the tolerance,
Tell them, I’ve not gone too far to return
I have already taken a U turn.
Though I might experience some struggle but you won’t see me fall,
As I have never chosen to crawl.
I am answerable to my destiny and won’t deny,
That, I’m not giving up easy like any other guy

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