We want to make life for everyone living with Ehlers-Danlos Syndrome easier. Our goal is to compile a full list of resources that may help you access services available nationwide, as well as tips for daily life with EDS. This is a long-term goal for EDSNZ so please check back regularly as we work towards getting information compiled and uploaded.
Social Support Resources
Having EDS can take its toll on your mental health, and it’s normal to grieve after a life changing diagnosis. While we here at Ehlers-Danlos Syndromes New Zealand are here to help, we also have a list mental health resources that are available to you.
Living with a chronic condition like EDS, where every day can be different to the one before, it can be hard to continue working and maintain your physical health. Here we have a list of financial services that you may be entitled to.
We know that some of our community feel apprehensive about accessing ACC following an injury. We have been in contact with ACC to have the process explained further and give some clarity around what they do.
If you’re having ongoing health problems, an injury or a disability, you may be entitled to receive some help around the home with housework, food prep, or even just getting ready for the day. Read more here about how Home Help works and how it may help you.
If you need help with basic tasks, get a referral to an occupational therapist to be assessed for home care equipment. Read on for more information about Occupational Therapists, how they may be to help you, and how you can access mobility aids even without an OT.
Medical Support Resources
You may have seen the Know Your Rights posters at your medical providers offices, but what specifically are your rights? We breakdown what your rights are and what that means for you when accessing medical care here.
Health Navigator New Zealand has put together these incredibly handy list of apps which enable you to have an appointment with a New Zealand registered health practitioner without seeing them in person. These health practitioners operate via video calls, text messaging, emailing or phone calls.
Creating a care team to help you with all the various parts of your condition can be very overwhelming. We’ve created this small guide to help you start building your care team whether they are doctors, physiotherapists or mental health professionals.
Adverse drug reactions and misdiagnosis are a serious risk during a medical emergency. Identifying your risks with Medic Alert Services give emergency responders confidence to act promptly to protect and save your life. Find out more about how Medic Alert Service may help you.
The Mankoski Pain Scale is a numerical scale ranging from zero to 10. The Mankoski scale is a tool that helps clinicians better understand an individual’s pain intensity, helping to ensure their pain is adequately addressed and managed.
Living With EDS/HSD Resources
Video sessions with Dr. Leslie Russek, PT, DPT, PHD, OCS. Each session touches on aspects of living with EDS/HSD including POTs and Mast Cell, with a Q&A session with questions from the NZ EDS/HSD Community. Downloadable PDF’s of each session are also available.
Jeannie Di Bon is an internationally recognised Movement Therapist specialising in Hypermobility, Ehlers-Danlos Syndrome and Chronic Pain.
Check out the gentle exercises series created for May Awareness Month 2023 here.
While EDS can have an affect on traveling, we have put together this guide of mobility supports you may be entitled to, financial aid services and support services that can help pay for traveling to medical appointments, and some few tips for traveling from our Loosely Speaking support group.