“Hi Kay. Hope you are keeping well. I see that you work at Rare Diseases South Africa and you are the Dysautonomia ambassador. I have some ideas brewing to raise awareness about dysautonomia amongst South African doctors and maybe the medical aids but I would like to touch base with you and get a feel for what has been tried in the past.
Kind regards Helen”
I stared awestruck at the screen and wondered if my eyes were not deceiving me. Is someone stepping forward voluntarily? Out of their own free will to assist and brainstorm ideas that can be a means of dire change? An unprecedented gesture since my 3 years of advocacy, coming from a person I do not know.
Boundless excitement reverberated. How could I not be elated at the possibilities and fruitful opportunities this collaboration would bring. Surely an answer to the innermost needs I had presented only before the controller of all affairs during the aftermath of the aforesaid endangered episode.
يا فتاح يا فتاح يا فتاح
Are the words I hung onto
Allah is fully aware of the feelings we do not verbalize, he never tires or ignores
True to his beautiful attributes, he opens not one but many surprising doors
I responded to Helen eagerly and learnt that her 17 year old daughter has been ill since a bout of pneumonia at the age of 6. Ever since, she’s been unwell and although previously diagnosed with Hashimotos, her condition under the prescribed treatment hasn’t improved.
Based on motherly instinct, Helen knew something else is wreaking havoc in her daughters body and took it upon herself to hunt for answers. She later discovered Postural Orthostatic Tachycardia Syndrome and suspects her daughter of having POTS in addition to Hashimotos.
(Her suspicion is a highly possible since half the percentage of patients develop POTS after a post viral infection. Covid included)
Their search for an accurate diagnosis has resulted in the same ineffectual end of disappointment after disappointment. Appointments that fuel frustration and anger to the point where her daughter no longer wants to consult with any new professionals recommended.
Helen then decided to channel her months / years of pent-up anger and negativity into a more positive manner after stumbling across a quote by Maya Angelou
Upon searching for avenues she found my profile online and reached out.
Several discussions took place. Numerous meetings were held virtually, until we agreed on a formatted plan of action to drive forward.
A brief overview of the developments underway are as follows:
New logo representation by which our work and aims can be identified, as well as a self hosted website under the domain of dysautonomia-support.org.za. Web designing is in process.
A healthcare provider registry based on suggestions and experiences of our group members. The registry has been completed, however few modifications are being made.
Distribution / sponsorship of The Dysautonomia Project book targeted at higher ranking professionals of authority, such as the president of the neurological association of SA, president of the heart rhythm association of SA and so forth. A potential list of targets are being layed out in this regard.
Your donations from our show your care keyring project 2019 has played a tremendous role in this field. What might have seemed like a little item and perhaps questionable as to how it would make a difference, has in fact, directed us towards a major breakthrough by making the books possible for purchase. A proof of receipt will be shown. There is no abuse of funds. It is a trust our conscience cannot betray.
The total of donations were R650. The cost of one book on Amazon is R430 – not sure if shipping rates are included. The cost of a book on Takealot is R612.
We then opted to contact The Dysautonomia Project coordination team directly and the assistance we’ve recieved is remarkable. Their kindness in making the books available to us at minimal (unmatched) costs with reduced rates of shipping a bulk package over, is heart moving to say the least.
Launching our Trendy Turquoise range of apparel and accessories as a means of heightening awareness. A percentage of each item goes towards the Dysautonomia fund trust. Items included:
🍶 Hydration bottles
🧦 Compression hosiery
And more as time proceeds Insha-Allah.
Making specific medications and treatments available to our patients. Unfortunately at this point in time, even those of us who have the privilege and option of receiving some treatments privately, cannot gain access to them.
For instance; Liquid IV hydration multiplier is a non-gmo electrolyte drink important to consume for daily symptom management, but not available in SA. We are partnering with the company in order to make it available this side.
Medical accommodation cards engraved with specific emergency needs. Example – needing to lay down in public places.
On the same note of patient information or a accommodation card, RDSA has also launched the following
After laying out the above, I can say it’s been a busy time hustling through the arrangements and discussions to ensure everything is coordinated correctly. We now place our reliance entirely upon the All-powerful to make miracles happen by means of these collected efforts.
و شاورهم في الامر
فاذا عزمت فتوكل على الله
و امرهم شورى بينهم
Our main policy: To secure blessings and success in all endeavors, no decision is made without consultation and mutual agreement between all team members.
Ultimately, as long as the roots of our intentions remain sincere and correct
The painstaking efforts put into these projects ought to have a desired effect
وَأَنْ لَيْسَ لِلْإِنْسَانِ إِلَّا مَا سَعَى ﴿۳۹﴾ And that man shall have nothing but what he strives for- (39)
وَأَنَّ سَعْيَهُ سَوْفَ يُرَى ﴿۴۰﴾ And that his striving shall soon be seen- (40)
ثُمَّ يُجْزَاهُ الْجَزَاءَ الْأَوْفَى ﴿۴۱﴾ Then shall he be rewarded for it with the fullest reward- (41)
We humbly request your special prayers of success for all that is to continue ahead 🤲