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10 Tips for Finding an Ehlers-Danlos Patient Advocate

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Finding a good EDS patient advocate can be like finding a needle in a haystack. But fear not, my bendy friends — I’ve got some tips to help you on your quest!

Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility is sometimes suggested to be a rare genetic disorder that affects the connective tissues of the body. But it is not rare, affecting approximately 1 in every 500, according to scientists at MUSC at the Norris Lab. But while we wait for the medical community to get knowledgeable, we must advocate for ourselves. But sometimes, it’s too overwhelming and we could use a little extra help. It can be difficult to manage and navigate the healthcare system, and patients often need support from professional patient advocates who understand their unique needs. But how do you find a good hypermobile EDS patient advocate? Here are some tips, with a touch of humor, to help you along the way:

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

1. Start by looking for someone who can touch their nose with their tongue.

This might seem like a strange suggestion, but trust me — hypermobile EDS patients have some seriously impressive flexibility, and being able to do this trick is a sure sign that they know their stuff, from personal experience!

2. Check their social media profiles.

A good hypermobile EDS patient advocate will have an active presence on social media, sharing tips and resources, and connecting with other patients. They should have a healthy sense of humor, too — dealing with chronic illness can be tough, but a good laugh can go a long way. A good patient advocate will be active on social media by sharing memes and silly videos to lift your spirits on those tough pain days. Plus, who doesn’t love a good cat video? Be sure to check their emoji game too. A good patient advocate should have an extensive collection of emojis to express their support and empathy and can convey a virtual hug with just a few keystrokes. Also consider their love of puns. A patient advocate who can work a good pun into their advice is a true gem. Look for someone who can make you groan with a bad pun, but also make you feel understood and supported.

3. Look for someone who can recite the Beighton score from memory.

The Beighton score is a tool used to diagnose hypermobile EDS, and a good advocate should be able to recite it without hesitation. Bonus points if they can do it while doing a backbend! Seriously, look for someone who has a good sense of humor. Dealing with chronic illness can be a drag, but a patient advocate who can make you laugh in the face of adversity is worth their weight in gold.

4. Check their credentials.

While it’s not necessary for a patient advocate to have a medical degree, they should have a deep understanding of hypermobile EDS and its impact on patients. Look for someone who has attended conferences or workshops on the subject, and who has a solid understanding of the latest research and treatment options. Current industry credentialed patient advocates have passed the Board certification exam (licenses not issued yet) so look for one who is BCPA certified or trained in advocacy if they haven’t yet sat for their exam.

5. Ask around. 

If you’re part of a hypermobile EDS support group, ask your fellow patients if they know of any good advocates. Personal recommendations can be invaluable, and can help you find someone who truly understands your needs. Look for someone who has a balanced approach. While it’s important for a patient advocate to be empathetic and understanding, it’s equally important for them to be realistic and practical. They should be able to offer both emotional support and practical advice for managing symptoms.

6. Consider their personal experience with hypermobile EDS.

While it’s not necessary for a patient advocate to have hypermobile EDS themselves, someone who has walked a mile in your bendy shoes can offer invaluable insight and advice. Find someone who has lived with hypermobile EDS for a significant period of time and has a deep understanding of its impact on daily life.

7. Check their availability.

A good hypermobile EDS patient advocate should be available to answer questions and offer support when you need it. You want a patient advocate who’s there for you when you need them. Look for someone who responds to your messages in a timely manner and doesn’t disappear when things get tough. As you know, we can boom and bust as EDS patients, even advocates occasionally cannot muster up the strength all of the time to work even on a pro bono basis.

8. Look for someone who is up-to-date on the latest treatments and research.

Hypermobile EDS is a unique condition, and new research and treatment options are constantly emerging. A good patient advocate should be familiar with the latest developments and be able to offer advice based on the most recent findings. If they can rattle off the latest studies and medical jargon, you know you’re in good hands.

9. Consider their personality.

Finding a good patient advocate is about more than just their credentials and experience — it’s also about finding someone you can connect with. Also be open to someone who’s not afraid to get a little sassy. Dealing with chronic illness can be frustrating, and sometimes you need someone who’s willing to dish out some tough love. A patient advocate who’s not afraid to tell it like it is can be just the kick in the pants you need. Seriously, look for someone who has a personality that meshes well with yours and who you feel comfortable talking to. Their help can be invaluable in helping you recover the parts of your life from chronic illness if you can jive together.

10. Final tip, and seriously this time… consider their ability to find humor in the worst situations.

Living with hypermobile EDS can be tough, but a patient advocate who can find the silver lining in even the darkest moments is a rare and valuable find. Look for someone who knows how to laugh at themselves. Chronic illness can make you feel like a hot mess, but a patient advocate who can laugh at their own awkward moments and embarrassing mishaps is someone who knows that laughter is the best medicine.

Finding a good hypermobile EDS patient advocate can be a challenge, but it’s worth the effort. Find someone who understands your struggles and can offer support, advice, and a healthy dose of humor. By following these tips (and maybe adding in a few puns of your own), you’ll be well on your way to finding the perfect patient advocate for you. And remember, laughter may not cure hypermobile EDS, but it can certainly help you manage the pain and discomfort that come with it!

Photo by Melissa Askew on Unsplash

Originally published: March 16, 2023
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