Upon my diagnosis, I searched the Internet for information on my rare Reflex Sympathetic Dystrophy Syndrome (RSDS) also known as Complex Regional Pain Syndrome (CRPS). The RSDSA came up and, despite being an American association, I found a place of hope, support, and education. It’s not easy to balance such a scary, life-changing syndrome with a positive and supportive message but this is what they’ve done!
They offer a range of educational articles and pamphlets to help better understand the syndrome as well as how to share it with loved ones and caregivers. They have a host of support groups and mentorship programmes as well as stage events and conferences at which CRPS sufferers can connect with each other and specialists. They keep us abreast of the latest treatments and share insights into the research being done. They financially contribute to CRPS research and help match research participants to research programmes. So, from diagnosis, RSDSA forms a lifelong relationship that helps the CRPS patient through every step of the journey. I’ve been encouraged, supported and equipped as I’ve moved from overwhelmed, searching for information, to connected and curious.
To this, they add their awareness campaign designed to educate doctors, nurses and the broader community about the condition so as to increase the number of correct diagnoses, shorten the time to treatment and increase empathy for those of us in pain.
All of this is offered at NO COST. This #GivingTuesday a generous donor has offered to match every donation made to RSDSA to the value of $5000. It’s an opportunity for your donation to have DOUBLE the impact! We’re giving $10, will you join us in giving someone in pain hope, community and understanding? Click here to donate: https://rsds.org/event/firstgivingtuesday-2019/