194 ~ The hope of one day ~

When I commenced the blog, not once in my wildest dreams had I imagined the manner in which 3 voices would be gathered to embark on a hefty mission and disseminate information. For 3 years + 5 months I could not find someone else afflicted with Dysautonomia, driven by a passion & determination that matches my own, in order to build our community in this province & country of SA.

At random times I wondered, perchance something were to happen, as my life touched the hazardous line on several occasions, would I die being the lone one who made a hullabaloo… Would everything slowly fade away & be forgotten after?!

Although there’s a little back up team of volunteers, I’m have to lead them on. They’re not living with Dysautonomia, so it’s not expected for them to know fully how to continue the movement without a Dysautonomia person’s guidance.

Little had I known, there were another 2 individuals, like myself, who were trying to plant seeds with hearts filled with hope that one day, something fruitful will grow out of these efforts. Be it far off in the future or nearby, one day, these seeds will blossom with proliferation

In the tiniest nooks of our hearts, a constant hope of one day stayed alive & the lingering concern later erased…

Each one, according to her individual capacity tilled the soil

Then after approximately four years of intense struggle and toil

The long awaited one day eventually came along

When the roots of their plantations were made strong

Three individuals yearning to make an impact

Finally “met” by coming into virtual contact

All by the arrangements of Al-Jaami ‘ – The gatherer

Who united three souls to make their cause stronger

We happen to share the same spirits, and echo our roles in one “voice”

These golden moments render me spellbound, its an occasion to rejoice

Immersed in gratitude and completely humbled, my veins pulsate with awe

Beyond our silent and innermost prayers, He grants so much more...

Alhamdulillah we are now able to strategize on a broader level. Individual skills are combined collectively to produce the best outcome with the Almightys help.

One aspect is coming together, but the second most important element, is the formation of trust, respect, & unanimity.

In light of our recent fundraising campaign that was launched during October, I needed to bring some new headlines to your attention. Recently there’s been an alarming & increasing number of news reports highlighting the major shortage of Dr’s, staff, funds, & resources in state hospitals… They’re unable to fix anything. Be it the physical state, hygienic measures, treatment, or overall service.

Waiting on the government to take up action, is like having far fetched expectations. If we have to sit back and only moan about the lack of order and performance, seriously speaking, nothing will change.

We as individuals who have the ability to do something & start somewhere, need to take matters into our own hands for a transformation to evolve. Having perceived this being a regressing issue since 2016 when I became a patient, I realised we’ve got to lead matters on from our side if we wish to see a change.

Hence it’s time to provide a review regarding our October campaign & acknowledge everyone who showed interest in supporting our mission.

We kick-started with a low cost in order to make it affordable for everyone who wanted to be part of the first item launch. Keeping in mind, we’re dealing with a community, of whom the majority of numbers are battling finances & have budget constraints.

So as time proceeds, our “build on projects” will be introduced slowly.

A shout out & ƬHᗩᑎƘ ƳOᑌ to everyone who purchased a keyring in support of Dysautonomia research 💙💙💙 They are still available during any other time as per request.

All 150 were sold, in fact, there’s a shortage of +-25 which took me by great surprise.

Should you wish to purchase or distribute in the future, kindly contact any of our “𝐒𝐇𝐎𝐖 𝐘𝐎𝐔𝐑 𝐂𝐀𝐑𝐄” KEYRING STOCKISTS:

BENONI:

Actonville

1) @binti_mahmood_1 – 082 497 3544

Mackenzie Park

2) @kay_born_in_may (Khadeeja Munchi) – 078 553 8251

Lakefield

3) @aaisha_loonat – 073 166 9434 (Lakefield)

4) Rubina –

JOHANNESBURG:

📲 H. Patel – 065 224 0919

DURBAN:

1) @ashleighpater (Ashleigh Paterson) – 082 901 4420

2) F. Vawda (Makada) – 079 559 2958

KINROSS:

📲 Bint Bashier – 068 058 8462

The stock hasn’t yet reached Durban and Kinross yet. But we’ll send out a notification once it does.

Every little amount counts & is greatly appreciated!

جزاكم الله خيرا احسن الجزاء

Shukran

Thank you

Biye dankie 😂

I have to commend & also extend tons of appreciation to the @we_fight_dys volunteer team for putting in endless hours of effort behind the front scenes. Your participatory in discussions & consultations for our projects to materialize. Your sincerity & selflessness is the lighting force behind the spurring success of events.

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To conclude, I’d like to add:

A basic summary & introduction was released by RDSA on social media outlets regarding the inauguration of Rare Voices 💗💙💚💛🧡💜💖

Thanks so much to all the kind individuals in our communities who backed us up & voted for us to be a leading part of this incredible development & transformative initiative.

We are extremely humbled & grateful to RDSA for affording us this opportunity to be ambassadors who will stand stronger together to shape the future for all who matter and deserve to be treated with dignity 🙏

We cannot permit patient negligence or professional incompetence to simply slide away

Now is the time to speak up!

Today’s silence, is tomorrows threat.

Introducing our latest Programme:

#RareVoices

The RareVoices programme has been developed, with the aim to ensure that our work is continuously shaped by the patients we represent.

With this programme we aim to allow the patient community to assist RDSA in:

· Helping us develop new resources

· Influencing policy development

· Partake in research

· Provide insight to patient medication and device development

· Strengthen patient involvement

· Check progress of RDSA projects as they develop

· Provide extended peer-to-peer support to ensure that patients do not feel alone or isolated

· Sharing of best practices and resources

· Raising Awareness of rare diseases across South Africa

#RareVoice ambassadors (who have been selected by their peers and fellow patients) will work with RDSA to build capacity, assist in raising awareness and work collectively to improve our advocacy efforts across all rare diseases.

To find out more about this programme, email rarevoices@rarediseases.co.za

(Some names were missed out, & the ones highlighted here, are the people whom I’m fimiliar with)

Riaan Madeleine DeWet Tania Cloete Melanie Christine Victor Rageema Livingstone Benita Blundell Cindy van den Berg Sachin Bhala Khadeeja Munchi Wirths Rina Ashleigh Paterson Enid Strydom Madelein Venter Flora Rammutle Daniela Pompei Nerissa Roberts Anne-Marie Du Plessis Ungerer Petra Ferreira Moriarty Danelle Van Zyl Maryke Thomson Sibongile Komati Pontso Khaka Moiloa Miracle May Diane May Non Helena Smit Tina Angelos Helga Weiland Candice Mes Megan Toni Hunter Erna Loretz – Neurofibromatosis Helen MaraisTamara Charles-Zawe Danielle Guignet JeAn-MaRi Van Zyl Smit Allison Borchardt Janet Grab Razelle Shulman Shanna Carmen Hiemstra Donna-Lee Forman Thembi Mthethwa Nabeelah Peerbhai Bianca Dessington Meg Row Chelesani Sibanda Iman Casoojee

Many a time, we tend to trivialize our sense of self power. Hesitance regarding individual potential is often displayed. Don’t be afraid to spread your energy. Step forward with courage and trust in the Most High. Let go of self doubt. Somewhere in the world, someone is appreciative of your contribution. It doesn’t have to sound loud or dynamic.

Be you

Do you.

I believe, there is wisdom and great reason

For whichever position we are chosen

To all fellow ambassadors; I know it’s really tough. Some days you’ll want to scream, cry, or run away from the responsibility of it all, although there ain’t any escape.

But please remember, “you can do dys” & “we got dys”

We’re here

To back-up one anothers force ✨

Advocate ~ Educate ~ Initiate