299 ~ Mind-blowing milestones ~

Amid Aaliya’s relentless roller-coaster of health detours, my stumbles, sinkers & having Helen hold the fort intact when both of us helplessly derailed off the patient leading tracks, we are humbled to mark these mind-blowing milestones & swing into the momentum of 2022 hoping the past year of efforts proves beneficial to all in our community ๐Ÿ’™

To every single person who backed us up either in the form of prayers that hit its target, monetary means, actively assisting hands-on with work, encouraging words by commenting, liking & sharing our posts to spread that much-needed awareness. Please know we appreciate you & your efforts which may seem small do not go unnoticed & unrewarded.

As we step into another smashing & successful time, we’d like to acknowledge & express a heartfelt

Thank you to @rarediseasessa for being our rock support & directing us expertly through every cause. Without your continuous guidance, none of these superb strides would’ve been possible & fruitful.

Thank you to all patients & health professional partners for being here, opening & broadening the scope for brand new opportunities, initiating conversations that matter & engaging with us by amplifying your voices for the needs of the underprivileged.

Thank you to all our well-wishers & contributors for your heartwarming acts of kindness which have cheered & aided us in succeeding thus far ๐Ÿฅฐ

As Aaliya often says:
๐“๐ž๐š๐ฆ ๐ฐ๐จ๐ซ๐ค ๐ฆ๐š๐ค๐ž๐ฌ ๐ญ๐ก๐ž ๐๐ซ๐ž๐š๐ฆ ๐ฐ๐จ๐ซ๐ค ๐Ÿค

Here’s to many more wonderful collaborations in the year ahead ๐Ÿ’ƒ๐Ÿ’ƒ๐Ÿ’ƒ


โ— Helen Van Niekerk joined forces with our Dysautonomia ambassador team which now totals the maximum amount of three.

โ— The building of a healthcare registry (in PDF format) for the guidance of our support group & easier accessibility to practitioners who are acquainted with Dysautonomia.

โ— Guidelines to maintain respect & unity among all group members (In editing)


โ— Successful participation & pooling in book resources for Imagination Stations at hospitals where kids & adults cannot reach out to reading material.


โ— Logo legacy – our official branding & representation completed & gifted by Kara La France after six months of designing discussion in the works.


โ— Aaliya co-hosted a Rare Room session with Megan Toni on IGTV discussing all things relative to Dysautonomia while shining a spotlight on Ehlers Danlos Syndrome.


โ— Expanded our social platforms & services to Facebook, LinkedIn & Twitter 

โ— Attended the four-day annual Dysautonomia International Conference & posted excerpts of the pertinent information on our social pages for the benefit of followers. 


โ— Special service by EMS providers for patients only within our group – proceedings in this regard are still underway. 


โ— Extended approximately 70 email invites to medical personnel for the CME course hosted by Standford Med.

โ— Prepped extensively for the Twitter chat co-hosted with SA Heart Association on Sept 28 – discussing the effects of LC (long covid) & post-viral syndromes such as POTS.


โ— Awareness month facts for public education & social media topic prompts 

โ— Bookmarks designed for TDP books with our social handles & contact details 

โ— Brainstormed ideas for coordinating a viewing of Behind The Visible film at hospitals/networking with med students

(Planning to be resumed in 2022)


โ— Khadeeja – Participated in a seven-session EDS ECHO Advocacy PP9 program hosted by The Ehlers Danlos Society America & received a certificate of attendance.


โ— The Dysautonomia Project book campaign was completed after 15 months of laborious planning.

#Repost @rarediseasessa

We are so proud of one of our affiliate Support Groups, @dys_support_sa , who have launched the sale of a book titled The Dysautonomia Project – now available for purchase through our online store at only R280 a copy ๐Ÿ’ƒ

This book serves a critical role for both patients and doctors in revealing some of the apparent mysteries of autonomic disorders. It fills an important need in the initial recognition and diagnosis of these often “invisible illnesses”, which is the first, essential step in helping patients get better care.

Get yours today by visiting our online store {link in bio} & please don’t forget to tag us too!



As of 29/12/2021 – We are 21 members. Commenced the year as 10 & during the year, 11 joined ๐Ÿ’™

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