Today being Rare Disease Day 2019 - an important, international event held annually, I have to share with you one of the most beautifully condensed poems originally featured by Patient Worthy as a rare disease special edition Enjoy reading & absorbing the meaningful words! Light & peace to all on this rare & special day … Continue reading 125 ~ Oh the places you’ll go ~
Month: February 2019
124 ~ Why the stripes? Part 4/4 ~
It's here 🤩🎉📢 In honor of all fighters and their families The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct. While each of the … Continue reading 124 ~ Why the stripes? Part 4/4 ~
123 ~ Why the hype? Part 3/4 ~
An entire compilation of facts to highlight why we've been making such a hype about the importance for the annual rare disease day events. For those who haven't yet read the previous 2 chapters, here are the links https://kayborninmay.wordpress.com/2019/02/13/120-why-the-hype-1-2/ https://kayborninmay.wordpress.com/2019/02/13/121-why-the-hype-part-2-2/ And a previous chapter written in contribution towards rare disease day 2018 https://kayborninmay.wordpress.com/2018/02/28/37-the-day-has-arrived/ Kindly read … Continue reading 123 ~ Why the hype? Part 3/4 ~
122 ~ This earth is only one ~
Assalaamu alaikum / Hi Respected readers: I'd like to thank you once again for your time, patience, support & eagerness to always read and learn.. The continuity of topics I had in mind has been interrupted due to unforeseen saddening circumstances.. Kindly bear with the disruption. On the 16/02/2019 our beloved grandad departed from this … Continue reading 122 ~ This earth is only one ~
121 ~ Why the hype? Part 2/4 ~
How to join the movement in SA? 1) Denim walk event in gauteng 👇 Kindly click on the link to purchase a ticket for the event http://www.rarediseases.co.za/shop All funds collected, are strictly directed towards improvement of health policies & patient care management. Your donations will go a long way & provide assistance to those affected … Continue reading 121 ~ Why the hype? Part 2/4 ~
120 ~ Why the hype? Part 1/4 ~
The significance of R - Raising A - Awareness R - Recreational E - Events The definition of a Rare disease Dysautonomia International is pleased to partner with the National Organization for Rare Disorders (NORD) to celebrate Rare Disease Day. Did you know that overall, rare diseases are not that rare? 1 in 10 Americans … Continue reading 120 ~ Why the hype? Part 1/4 ~
119 ~ The opportunity to rise – Part 2/2 ~
(Continuing from 118) To clarify; the episodes of unconsciousness Ive been experiencing frequently is as follows.. - It occurs particularly if I have over exerted in terms of physical activity or an attempt of exceeding speaking boundaries while at rest. The reason why I appreciate people who can sit with me in comfortable silence & … Continue reading 119 ~ The opportunity to rise – Part 2/2 ~
118 ~ The opportunity to rise – Part 1/2 ~
On the 29th of November 2018 I had a major episode, whereby I went into Respiratory Failure... But due to being on bipap.. I came out of it after a few hours... Thereafter many people were a bit confused with regards to how this transpires.. So I thought it'll be easier to answer the load … Continue reading 118 ~ The opportunity to rise – Part 1/2 ~
117 ~ Disability tool aids – Part 1 ~
This is a post of some random items listed, that can be of assistance to people with disabilities. Be it visible or invisible. Categorized as part 1, so if need be to list more in the future, i can add it on as a second part for easier referance or search. 1) Hair wash tray … Continue reading 117 ~ Disability tool aids – Part 1 ~
Swimming Through The Waves 