The CRPS/RSD patients who do the best are those fortunate enough to have loving and supportive caregivers, like you. You may be the parent of a child with CRPS/RSD, or a spouse, or a close friend. Whatever role you’re in, RSDSA has information and help to offer you, including connection to support groups and peers.
Caregivers for People with CRPS/RSD find strength and comfort from the RSDSA community. CRPS/RSD can be isolating for families. You may feel that you’re alone in this life-altering journey. But you’re not.
As part of the RSDSA community you will learn:
- How to get a concrete diagnosis and start effective treatment asap, especially important to parents who know that the earlier they get help for their children, the better the chance of remission
- How to help your loved one or friend without stifling them
- How to plan better for daily living
- Tips and advice that will help your friend or loved one become more independent and develop better function
- That you need a break from time to time and how to find resources for respite care
- News about the latest available treatments and research
- How to cope with financial issues, including insurance and workman’s comp denials
- How to contribute to RSDSA fundraising efforts
- How to cope with lack of physical intimacy with your spouse
- Where to find resources of all kinds for living better with CRPS/RSD
Here are some links that may help you as a caregiver:
- View a panel of caregivers discussing caring for their loved ones with CRPS
- Appreciating Our Caregivers – with Nancy Shurtleff
- If you are on Facebook, ask to join this online group for caregivers for people with CRPS
- Apply for a Rare Caregiver Respite Grant
- Psychology Today: A Not-To-Do List For Caregivers of the Chronically Ill
Consider reaching out to us by phone or email to introduce yourself and learn more about how you and your friend or loved one can benefit from our vibrant and committed RSDSA community.