We joined organizations across the world in observing this day.
Thank you for the support.
Sharecare Ghana sincerely thanks the Lordina Foundation for their generous donation to ease the stresses of the COVID-19 pandemic.
Thanks to Mr. Elijah Amoo Addo and his team from the Food4All Covid-19 Community Emergency Intervention Program for providing food relief items in these difficult times.
We are also grateful to the Ministry of Gender, Children and Social Protection, the SDGs Social Platform, Ghana Federation of Disability Organizations and all others that have supported us during this period.
Sharecare – We care…
THE 2ND SYMPOSIUM ON RARE DISEASES AND ORPHAN PRODUCTS AS PART OF RARE DISEASE DAY 2020 AWARENESS. Venue : O&G Auditorium at Korlebu Teaching Hospital.
Thanks to the Lordina Foundation and Mmofra Foundation, our Christmas party came on on Friday 20th December. We sincerely thank the two foundations as well as Hon. Zanetor Rawlings our MP, Hon. John Majisi, and our members Nana Akwasi and Farida for their support.
Our thanks also go to Bishop Dr. Hackman, BBNZ, Church of Pentecost, Anna and Christopher for the goodies and finally to Father Christmas for making it really feel like Christmas.
We enjoyed ourselves thoroughly!
By Rachit Shah
“The treatments themselves do not cure the condition; they simply restore the body’s self-healing ability.” Alternative Medicine ~ Leon Chaitow
As promised, I am dedicating another article to my pissed off attitude towards Healing by expressing my commitment towards alternate therapies, some tried and tested and others worth a mention. From a macro perspective, alternate therapies have immense potential but this article reiterates their scope pertaining to Isaac Syndrome.
It was in the month of June’19, when my entire house was immersed with a rare form of fever which overshadows many souls and minds, once in four years, the Cricket World Cup carnival. It was an electric afternoon which brought my cousins and friends under the same roof showing off their V-necks representing the teams they supported. The idea was to watch their favorites perform and play Poker as well. I caught all eyes as curiosity was in the air and for me the entire atmosphere was a pleasant change from the humdrum of daily routine.
Q) How have you been Rachit? Are mainstream medicines preparing your body to be hit by some tsunami as you look a little drained? asked Vishal (a confidante and close family member).
Yes you’re right, consuming mainstream prescriptions for long can increase the rate of side effects as active ingredients in various preparations can quietly clash and invade our system in low tones.
Q) Does that mean, you had some side effects?
Yes, but due to timely managing the situation, there are no major traces left behind.
Q) Were you lucky or is it something else?
Alternate therapies offered enough protection from the long term negative effects of mainstream medicines.
Rohit (a support system in crisis) cut me short and asked everyone to join for some school styled lunch in the dining area. It seemed an interesting destination, with all known faces trying to grab their midday meal simultaneously preparing for some entertainment. There was another reason to feel vibrant and alive as together we congratulated Vishal, on the arrival of an adorable little creature wrapped in renewed spirits whom he named Divisha.
As soon as we were done, the place had two different sets of people, one wanting to delve into the purpose of invitation and the remaining wanting to put their inquisitiveness at rest by continuing our discussion. It goes without saying that, I was expected to be a part of the latter one.
The topic was of immense interest to our two doctors, Ruchi (a friend and an orthopedic with great cooking skills) and Ravil (a cousin and a physician who has a sincere golden heart).
So I gathered my steam and started to narrate.
I was injected with heavy dosage of Steroids which increased my sugar levels and simultaneously swelled my hunger, weight and tiredness. The future intensity and impact of these levels sent sensitive signals to my treating doctors and they immediately started me with insulin shots. Considering the complexities, it seemed the best decision.
I still thank my amazing sister for introducing me to alternate treatments which resulted in reducing my insulin dosage by ¾:- Strict diet chart, juices of bitter gourd and Indian gooseberry, jamun fruit ground seed – a tablespoon on empty stomach, magnetic acupressure and homeopathic medicines. Though it seems a long list, it synchronizes fast with daily routine.
Today anyone and everyone seem to know about everything when it comes to healthcare, religion and politics. Suggestions even poured in from people who never had anything to do with medicines.
Ravil, being a doctor was expected to add his comments for sure, and he did. That’s great; I think you should initiate a mobile application to reach patients of local and international domain and spread a word of help, he said.
And what about your body pain, one of the major symptoms? asked Rohit.
For pain management, I have a piece of raw garlic early morning, my homeopathic medicines, magnetic acupressure along with my mainstream medicines.
Oh, that’s interesting; I didn’t know that a piece of garlic can work wonders in such intense pain.
Garlic supposedly has a bouquet of medicinal qualities with scientific evidence on anti-inflammatory responses and its ability to boost our immune system.
To complement alternate therapies, I even worked hard on SRP (systematic reduction plan) by regular monitoring and reducing my daily dosage of immunosuppressant, pain killer, insulin and medicines in consultation with my doctor (from 42 pills a day to 18 now).
On the other side, the game of Poker was in full swing. Cheering amplitudes were vibrating in the house when I was asked to join and share my experience.
Q) What do you think are some other miscellaneous helpful changes you tried your hands on? asked Apurva (an investment banker and a spiritual landmark to many).
As said that ‘a charging bull always looks at the red cape and not at the man with the sword’, I decided early to keep my eyes fixed on this armed man therefore agreed to make small miscellaneous changes by keeping surroundings green, paying attention to body postures, inculcating a self motivating attitude, wearing surgical mask while in a crowded place, taking up a sport as a therapy, wearing loose clothes and sticking to a positive attitude.
Q) Loose clothes? Are you serious? Was it a personal choice or is there something around it?
Tight clothes can cause nerve compression and I realized that wearing loozies made me feel lighter and relaxed.
Wow dude, didn’t expect you to dig the well so deep. This is getting interesting.
I was advised to have mild body massage often which was effective to reduce my stress levels, helped in pain management, eased stiffness and improved my flexibility. Along similar lines is Music Therapy (a math to convalesce), an effective tool which helps bridge gaps between emotional, spiritual and mental needs. I initially, focused on a variety of music engagements and zeroed down on customizing some to my palate.
Q) You did mention about Magnetic Acupressure? What’s that all about? Was it effective? asked Ravil.
It’s a science that stimulates and influences the acu points in the body to balance the accurate flow of energy integrating with individual organs rather than co-coordinating with the entire system to generate results. The benefits were easily measurable. It helped me reduce high sugar levels and back pain, leveled my BP and capped excess flow of protein from urine.
Q) Is it important to know what sort of person has a disorder than to know what sort of disorder a person has? asked Vishal.
I respect the prowess of modern medicine but alternate therapies were adapted as a science to stay NATURAL. I never cared whether a therapy derived from some ancient medical literature or a test tube instead the safety, durability and its effect. It is very individualistic in nature.
Q) But how do you gather enough evidence about these therapies before trying your hands on?
I relied on anecdotal experiences more than evidence. I connected with patients who demonstrated the power of their experience and got hints. These therapies integrated well with my allopathic medicines and most importantly I got a green flag from my treating doctor. I kept reminding myself that I had much more to gain if these therapies fell in place than to lose if they don’t.
Q) Did your doctor support this holistic approach to your treatment?
Before, I could add, Ravil amicably mentioned that today any doctor rigorously supports the theory of Caveat Emptor and denies putting their skin in the game when the premise sounds too good to be true.
It was time for some food again, nobody bothered about the match anymore as it was getting recorded for the fanatics. To relive the old memoires, three of them got behind the kitchen counter, one arranging the ingredients, one making toast and the last one trying to create a difference with some locally roasted freshly brewed coffee beans from Coorg. The association of tasty snack and good times lasts a a lifetime. Oh…. it was nostalgic. In no time everybody was stuffed when Rohit asked if I follow any specific protocols immediately after waking up?
Yes, very much. Apart from the activities mentioned earlier, getting enough Sunlight is full of muscular energy. It has powerful impact on neurological disorders generating Positive Thinking.
Having a healthy breakfast is important as it’s the first meal of the day. That reminds me of what Mark Twain once said that the only way to keep your health is to eat what you don’t want, drink what you don’t like, and do what you’d rather not.
Taking care of what, when and how we consume food is the key for e.g for me a gluten free diet generated positive results (some people react to gluten differently by sensing that body has toxins and
causes trouble for the immune system. Removing it might reduce symptoms of leaky gut and lowers inflammation).
Another treatment I follow rigorously is based on nature’s law of cure that takes a holistic approach towards treating the root cause of the disease rather than having a short term attitude called Homeopath. The remedies are normally based on natural and non-addictive ingredients which gel well with the immune system.
Kushal (a motivational speaker) inspired me to stay occupied as an active mind for sure cannot exist in an inactive body. During his lull period he learnt a language, took up a study course, tried completing his pending work, pursued a hobby and learnt a music instrument. Serious involvement in any activity would engage the mind and body to think constructive and be healthy. To support an interesting theory called Sports Medicine, I initiated table tennis.
A lot was discussed as the day was coming to an end and so were my Spoons.
Treating pain is hard as it isn’t just physical; therefore I hope these techniques can add to the fighting spirits of my readers.
We all are fighters and don’t wish to be remembered as someone who easily surrendered. Let’s together keep finding solutions for a better tomorrow.
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.
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.
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.
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…