179 ~ Reaching stronger heights ~

It’s time to put Dys matter under full spotlight & kick-start our turquoise themed quiz.

We’d like to buzz your brains a little, to survey how much knowledge has been gained & spread regarding.

Clues for the quiz will be posted on the 10 remaining weekdays of October. Winners will be announced on the 31st. Details will be taken and arrangements for prizes will then be made accordingly. We’re keeping it a secret until participants recieve & open their gifts which is a little token of appreciation from our side for your willingness to learn & time to show some care.

(Unfortunately prizes are only for national participants as we’re unable to ship worldwide. Although our international followers are most welcome to still interact 💙💙💙)

Previously, there hasn’t been any kind of Dysautonomia Awareness Drive. Hence, we’ve initiated the quiz with an intention of getting the public more involved by having interactive discussions, as I’m sure graphics are simply scrolled and passed by most people.

We’re beginners on this venture & therefore request you to kindly overlook any errors or shortcomings that may be committed unintentionally or unknowingly during the course of the drive.

Due to all our team members facing ill health, we cannot guarantee a certain time for each days clues to be posted, but we’ll try our best to stick to one time frame.

Sounds easy but a little tricky 😆

Take note of the – keywords – used to get the answer 💯 correct!

We’re being kind at heart & reasonable 😝 So participants are allowed 2 attempts 🤩

Challenge 1:

Please comment with your answer in the section below or if you’re more comfortable responding via whatsapp and Instagram for people following via those channels.. You’re most welcome to participate on whichever platform. Notes of the participants will be taken.

Accompanied by the launch of the quiz we’re also pleased to inform you regarding a set-up of the first Dysautonomia research and educative fund trust. Up to date there aren’t any authorized organizations in South Africa dedicated towards promoting awareness, research & education.

In the past I also recieved queries from some selfless and kind hearted individuals regarding an account or avenue where funds could be donated to assist with methodology change. We’re ecstatic to finally announce, the vision for which we toiled diligently, has materialized 🎉🎊🎈✨

(This vision has been explained extensively in the following chapters pertaining to rare disease day

The principle and process of life is that nothing gets built, produced or manufactured overnight. No home, no car, no business, no type of success is attained in a simple and easy manner.

Only with constant effort & being fiercely determined for matters to move in the direction you wish, will the crops of your seeds yield.

Advocacy

Awareness

Advancement

The 3 A’s for rare & rarely known diseases require a long term series of labor, sacrifice, sweat, tears of blood, frustration, disappointment, falling down, giving up, rising again with a stronger sense of perseverance + patience, coupled with prayer, & determination.

Glory be to our merciful lord who never disappoints those who call unto him even with the most silent invocations. It took a period of 2 years for our efforts to slowly develop and then reach this major turning point where our voices have caused a stir in the system, via the constant sacrifices made by the RDSA network.

For your enlightenment this is how matters are being coordinated

In this light, we are also excited to inform the public regarding the launch of our first selling item!!

A keyring at the cost of only R20. We’ve provided clear-cut proof & a definite guarantee that all donations are proceeding towards the Dysautonomia fund trust.

The following quote has been printed in the keyring. Once the package reaches us we will inform you regarding the pick up points to purchase.

While the current situation around is totally bleak. As mentioned in the chapter titled:

A special commemoration

Up until this date, our entire support group cannot list a professional in Gauteng who has a proper basic understanding of Dysautonomia, let alone knowledge of its intricacies.

People have become despondent & most have lost total “hope” after recieving no assistance & expertise in most provinces of South Africa, be it private, or state hospitals. Unfortunately some reached the point of desperation, where there seemed to be no way out of the mess, leading to the ending of their lives (which calls for another discussion)

Undoubtedly, it is a haunting and traumatic cycle to undergo. It’s not easy to constantly face the same ignorance, illiteracy & dejection almost everywhere you go. Magical revivals is the reason I am still here. Had it not been for those key elements, I would’ve probably been doomed myself.

But I also believe we’ve been assigned this battle because we’re the ones who are built for it.

The future does not have to be the same as our current situation. There is an option to accept or decline the scope for us to create the one we’ve sketched out in our minds. Will it be fair to moan that most professionals “skills” aren’t working in our favor, yet we do not then take a firm stand for a plan of action to evolve?!

In light of the above; Dysautonomia South Africa has been established to eradicate the overpowering sense of despair seen among patients & their families.

While there may not be a treatment plan formulated / known to completely “cure”. Surely, we can work towards a more effective protocol where people with neurological symptoms are believed and taken serious when stating they’re ill.

Our burning desire is to decrease the 6 year lengthy period of diagnosis to a time-frame of 15 minutes – The Dysautonomia project has stated 15 minutes is the actual duration it could take for a diagnosis to be made by a physician if they’re well tuned in to the latest updates & literature.

Our burning desire is to see patients struggle less to recieve their appropriate modes of treatment.

Our burning desire is to see them being able to live some type of a life & regain a greater sense of their independence.

Our burning desire is to kindle hope in the heart, thus lessening suicidal rates.

Dysautonomia South Africa assures you; we are here to serve our nation in the spirit of Ubuntu ✨

You are not alone.

Your pain is felt.

Your struggle is understood and shared.

The weight on our shoulders can only be made lighter

By fighting faithfully together – for the future

Much appreciation to our selfless and devoted volunteers

DSA has reached stronger heights because of your cheers

تقبل الله منا ومنكم صالح الأعمال

(Here is Aaliyas proof for advocacy and funding. Mines has been attached in the previous post)