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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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Adult physio resumes

May 30th, 2018 · No Comments

Thanks to our generous sponsor, we are starting adult physio again. Join us on Thursdays at 9am at the Accra Rehabilitation Centre in Adabraka.

Please note that you need to be a Sharecare member.

Look forward to seeing you and God bless you Tobi for your kind support.

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Northern Region Branch of Sharecare Ghana Launched

May 22nd, 2018 · No Comments

The launch of the Northern Region branch of Sharecare Ghana took the form of a workshop to sensitize participants on Sharecare Ghana, diseases classified as autoimmune and neurological, and the benefits of belonging to such an organization.

The first speaker, Ibrahim Moro, who is project manager for establishing the branch, gave a brief history of Ghana Federation of Disability Organizations (GFD). He stated that the federation was established in 1987 as a national umbrella organization for organizations of persons with disabilities (OPWDs) in Ghana.

He urged the general public, especially parents of children with disabilities to educate all their children without excluding children with disabilities. He emphasized inclusive education and not to segregate those with disabilities from the others.

Mr. Ibrahim Moro said the presence of Sharecare Ghana in the Northern Region will not only help those in the region but the Upper East and West regions, since the doors of membership of Sharecare Ghana are open to all without any discrimination. He urged members to consider the organization as a non-profit organization and be ready to assist it to have a strong base in the region.

Mr. Abukari Awudu, gave the background of Shareca re Ghana, the organizational structure, past projects, strengths and weaknesses.

Dr. Mohammed Salifu spoke on Autoimmune and Neurological Disorders. He said these conditions are difficult to identify and treat and advised patients to sek medical help in all circumstances.

Fifty people registered to join the Northern Region branch of Sharecare Ghana.

For more information or to join Sharecare Ghana Northern Region, please email: moro1906@yahoo.com

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Heroes Are Made in Unexpected Circumstances

April 16th, 2018 · No Comments

By Ankit Shah (name changed)

‘’I would like to see ANOTHER well articulated, inspirational piece of work coming out soon. Your endeavor to help others should act opposite to the Law of Diminishing Marginal Utility’’, said readers who were the influential spirits behind me keeping the flow of communication on Isaac Syndrome, a diverse disorder as a result of muscular hyperactivity.

My previous Case Studies ‘My battle with Isaac Syndrome, and the struggle for a cure’ AND ‘Isaac Syndrome: Here’s what you can learn from my experiences’ were my attempts to pen down information on various aspects involved while coping with daily life and to inspire patients to be uncomfortable with a bailout option.

Purpose of this Inscription

Recently saw this epic film, Forrest Gump again, but this time it took my imagination on a ride.

A couple of years back I had taken up Table Tennis to recover from my workload; it was a rejuvenating experience. It’s like a drug free high-vitality sport without the risk of collision injuries where finding out what your opponent is thinking does matter. My racket, had gathered dust when I decided to rerun the episode, this time to try conquering health setbacks; only apprehension being my mum’s best china.

Your idea of fun will change

So that’s how I found myself one fine day getting a TT table installed at my place trying to overcome years of pain and stiffness in my muscles.

The initial assessment of my hand movement was made by a close friend who qualified in fine motor skills and had experience in Sports Medicine. I visited a qualified table tennis specialist with an idea of getting the right advice before taking up the sport. The only constant thought running was to be at my best and keep attempting for a bailout.

Finally the day arrived when I decide to try out my new racket and the newly installed table.

I decided to wear my activity tracker band to record my personal metrics. I found it way ahead in gauging my personality and constantly pushing me to new limits. Recuperation methods are faster these days but it’s still essential to improve flexibility as a crucial part of the overall treatment regime.

All of a sudden, my muscle memories got activated and reran old episodes of playing with friends where we roared, ran around like hooligans and ate our favorite course during breaks. I still felt grateful for this current moment.

I started to concentrate on watching the flight of the ball bouncing towards me from the other side. It abruptly changed direction. I slowly indulged myself to prove whatever I lacked in talent should show in stamina. Initially it was like dodging a bullet, trying hard to beat my opponent, but I took it as any other therapy.

During playing sessions, I still have to take unwanted breaks but would like to believe that resistance is slowly building up; if not, at least it makes me feel like a warrior for some time. Every shot I hit takes me closer to feeling a notch healthier.

I discreetly recollect one of my sessions where I met my nightmare of having a severe back spasm which knocked me down for three days, completely out of action and made me realize why NASA studies said that table tennis is the most difficult sport to practice because of its complexity in the use of muscles, more than 80% from feet to neck. The wish of bouncing back was so powerful that it got me to high spirits on the fourth day.

My longest rally without break was around 6 minutes which almost took me to some celestial space but exhausted me the very seventh minute. As I come towards the end of my narration, I’m still trying a good acceleration and grip over a strong synergy between the sport and myself. Heroes in the sports field or one’s battle with any ailment have much in common.

My story raises a couple of interesting questions, at least in my mind:- 

  • First of all when and how did my game change for the better?
  • Did the impact of this current set-back leave me stronger than before?

The only answer was to keep learning and build stronger experiences:-

  • Change is indeed possible
  • One can use today’s technology to your benefit
  • Focus on postures can reduce pain and increase fun
  • Taking up a sport can add to your disciplined lifestyle
  • Re-educate yourself about the condition and modify habits
  • Understand the difference between what ‘you should’ and ‘can do’.

The Shadow Analogy

I started to draw out analogies between taking up a match in table tennis and Isaac Syndrome. The conclusion was:-

  • A person who is gracious in defeat in a match or his pain, is set to recover and win
  • If it doesn’t challenge, moving up the ladder is like a dream with open eyes
  • There are two ways to conclude a match or battle a disease, you’re either in or out
  • Being deprived of winning a game or any suffering is just a temporary phenomenon, it might be for some time but if we quit, it becomes a habit and lasts forever
  • For us to move faster in life, situations need to get out of control
  • Heroes in sports or one’s battle with any ailment have much in common
  • Find something that gives joy, and the joy will burn out the pain
  • Be in control: -One’s grip is an important aspect (in a game or a life situation).

Conclusion:-

‘Competing for a trophy’ is old, let’s walk our talks and get counted.

This article sought to ignite the conversation around alternative drug free therapy.

If you wait for another case study, it will be too late.

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How did We Ring the Bell?

March 23rd, 2018 · No Comments

— The Manifesto —

9 OUT OF 10 CHILDREN WITH A DISABILITY ARE NOT WELCOME AT SCHOOL.

Countries have mutually agreed* that it should be possible for all children to go to school, no matter what. This includes children with a disability. But this vulnerable group is frequently left behind at home, and if we don’t act, will also be left behind in life. We are sounding the alarm bell and saying:

ALL CHILDREN ARE WELCOME TO SCHOOL, INCLUDING CHILDREN WITH A DISABILITY.

Hence, 10 urgent action points:

  1. All children want to be able to reach school.
    Provide children with disability (adapted-) transport to school.
  1. All children want to be able to enter and pass through the school.
  2. All children want to be able to visit the restroom.
    Provide an adapted restroom at every school for children with a disability.
  1. All children want to receive ‘honest’ education.
    Adapt lessons and rules for children with a disability.
  1. All children want to play.
    Allow children with a disability to participate in sports and games at school.
  1. All children want friends.
    Teach children how they can be there for children with a disability.
  1. All children want parents to help.
    Stand up as parents for children with a disability.
  1. All children want good guidance.
    Train teachers on how they can better counsel children with a disability.
  1. All children want positive attention.
    Children with a disability have the right to go to school.
  1. All children want to just be kids.
    Let children with a disability advance and enjoy.

Finally:

It is high time that ‘accessible education’ becomes a reality in all nations. All children with a disability must feel really welcome at school, wherever they are in the world.

So please sign and share this manifesto. On behalf of all children with a disability, Thank you!

The Liliane Foundation

* As stated in the UN Convention on the Rights of Persons with Disabilities (CRPD), the UN Convention on the Rights of the Child (CRC) and the 2030 Agenda for Sustainable Development.

And pictures from We Ring the Bell at Osu Presby cluster of schools

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Count down to 21st March 2018…

March 18th, 2018 · No Comments

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We Ring the Bell on 21st March 2018

March 12th, 2018 · No Comments

By Abena Serwaa Bonsu

Sharecare Ghana will join other partner organizations of SWEB (Samuel Wellington Botwey) Foundation to Ring the Bell on 21st March 2018 under the theme “All children welcome in school!”

Ring the Bell creates awareness of the need for every child to be in school regardless of his or her condition. The main objective is to focus on accessibility, acceptance and adaptation as preconditions for every child to go to school.  

The fact is that, 9 out of 10 children with disabilities are not welcome at school because of poor physical accessibility of schools, curriculum not suitable to all learners, lack of acceptance within schools and community and social difficulties etc. All children can go to school if we focus on accessibility, acceptance and adaptation as preconditions for every child to be in school and also train our teachers to handle children with special needs.

We Ring the Bell with five minutes of noise for children with disabilities worldwide that cannot go to school. Students, teachers, local leaders and government representatives will Ring the Bell with us at the Osu Presby cluster of schools in Osu and after 21st March, SWEB Foundation and partner organizations will continue with advocacy activities throughout the year.

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Farida will be speaking at the African Women’s Leadership Conference…

March 7th, 2018 · No Comments

www.wellesley.edu/awlc  We are proud of you Farida!

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Special Mothers Donate

February 13th, 2018 · No Comments

Thank you, Special Mothers Project.

Read more here: http://specialmothersproject.blogspot.co.ke/2018/02/special-mothers-project-supports-five.html?m=1

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Christmas at Kinder Paradise

December 31st, 2017 · No Comments

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