170 ~ A huge breakthrough ~

Surely with every difficulty there will be ease

Surely, with every difficulty there will be ease

Hold tight with faith onto this powerful promise

Words of assurance to encase you in solace

And like I did repeatedly, later at some point you will witness

The fruits of holding tight..

The conviction there is light

And the purpose for your plight

Upon request, on the 13/08/2019, RDSA created the first Dysautonomia whatsapp group for (South Africans), to support each other and thereby tackle issues.

A little less than one month later, my phone beeped with the following message

Hi – just a reminder regarding the message 👇 – please can you nominate someone to champion the advocacy from a dysautonomia disease perspective – we want to make sure our advocacy efforts are as inclusive as possible – thank you

Dear Rare Diseases SA Community, As you may know, we are super busy at the moment dealing with all the healthcare legislative changes currently happening.

Bottom line is: WE NEED TO RAMP UP OUR ADVOCACY EFFORTS.

One of our mandates, is to develop a united voice across our community – to do this, we need your voices. So we are looking for ways to make this an easier system to feed into, as we know, that all of you as patients already have alot to deal with.

We are therefore asking for all the Whatsapp group users, to identify 1 or 2 people per group, who will function as ambassadors for the disease group.

The function of the ambassadors will be as follows:

1) Engage with the patients with this condition on a peer-to-peer level,

2) Identify unique challenges experienced by the community and raise these with RDSA,

3) Provide responsible info to patients,

4) Monitor communication platforms,

5) Identify patients in need of further referrals,

6) Distribute and collate information on advocacy efforts.

Basically, this is like being a class mom 🙂

All you need to fulfill this role is

1) An internet connection,

2) Access to a computer occassionally (to add resources),

3) a phone and last but most important – a passion and desire to help strengthen our community.

If you are willing to assist with being an ambassador, please complete the details on the link below. Once this has been received, we will send out nominations in the various disease groups for patients to accept the nominations.

Once again, now is the time for our groups to come together and fight for change to ensure we do not get left behind. We are an extremely expensive crowd of patients to treat, and we will be ignored without us pulling together.

Thanks everyone, Rgds, Kelly.

I yelled in delight at the opportunity and submitted the form 🤩 Shout out to everyone else who done the same on my behalf

The anticipation to be accepted as an official ambassador grew

Finally, there came the confirmation of a huge breakthrough

After 3 years of yearning, hoping, praying, and waiting, a dream came true

On the 09/10/2019 I recieved the following email confirmation of being accepted as an “official” ambassador and advocate for @rarediseasessa – Dysautonomia 🎉🎊🎈

During the times I felt disheartened, the following quotation of Prophet Muhammad (peace be upon him) spurred me on:

“The best of people are those who benefit mankind”

I’d coax myself by saying, one day, at some point, our efforts of advocacy will reach the point I vision..

Believe, these are all milestones towards stronger achievements and greater heights;

Where people struggle less to recieve appropriate health care.

Where people will not be denied access to required expertise and treatment

Where the underprivileged will not have to suffer in silence.

Thus saying, I am extremely humbled and grateful to my creator for fulfilling one of my deepest desires beyond any expectations.

الحمد الله و الشكر لله

I’m also pleased to introduce you to an amazing advocate partner by the name of Aaliyah, someone with whom you can also feel comfortable forwarding any Dysautonomia related issues, as we’re working in cooperation.

Of course none of this would’ve been possible without the unconditional support, strong belief and prayers you’ve provided throughout the duration of this 4 year journey.

To all soul sisters & crew members always ready to help and give an extra kick start whenever the need be, for matters to get moving into action.. May you blessed with the best of both worlds.

I’d like to remind people once again

The work being carried out by RDSA is not easy but with diligence we persist

In order, for solutions to evolve so a more efficient system can exist

To address matters which are of utmost concern

Without seeking any kind of payment in return

Working patiently for our lords pleasure

And hoping for reward without measure

“Surely actions are based according to its intention”

May this pathway open the doors towards many more opportunities

May the seeds we plant yield fruitful outcomes for all to derive benefit

May every endeavor be a successful means of upliftment for societies and generations in time to come…

امين يا رب العالمين

Here’s to brand new beginnings…

و ما توفيقي الا بالله