Visible Illness

Visible Illness EDS Medical Advocate | Beating Underdiagnosis Together!

06/05/2026

I’ve seen patients waste thousands of dollars and be disappointed time & time again hoping their providers would assess them for EDS, facing medical gaslighting and outright dismissal. But the truth is, most providers aren’t knowledgeable and aren’t willing to educate themselves. The best way to get results is to find a providers SPECIALIZED specifically in assessing & diagnosing EDS. Geneticists can be frustrating and oftentimes a dead end for patients, and oftentimes a rheumatologist seems to have a higher percent chance of actually assessing you. Just check their website and make sure they’re specialized in EDS. Unfortunately most of the time getting a proper EDS assessment & diagnosis means cash only. It’s a hurdle, but it’s the first step on your care journey.

In my work as a medical advocate, I’ve noticed that geneticists can be the most difficult providers to get a diagnosis...
06/05/2026

In my work as a medical advocate, I’ve noticed that geneticists can be the most difficult providers to get a diagnosis from. Oftentimes, a Rheumatologist seems to have more positive results with actually getting assessed & diagnosed for . But ultimately the most important thing is to check and make sure it actually says they assess and diagnose EDS on their personal page or practice website. You almost always have to find a provider that specifically specializes in assessing & diagnosing EDS—and unfortunately they’re almost always cash only. $700 on the low end and $1800 on the high end.

06/02/2026

If EDS, POTS, MCAS isn’t caught early, you can develop secondary conditions like ME/CFS

It’s crucial to get diagnosed & treated early or you develop secondary conditions. POTS drives disease. The Pentad patie...
06/02/2026

It’s crucial to get diagnosed & treated early or you develop secondary conditions. POTS drives disease. The Pentad patient or the Pentad Super Syndrome is basically a patient that has developed these secondary illnesses—EDS, POTS, MCAS is the Triad, with the other 2 illnesses creating the Pentad Patient is often from the following: Cranial Cervical Instability, Gastroparesis or Gastrointestinal complications, Thoracic Outlet Syndrome, or Intracranial Hypertension or other complications around neuroinflammation. Believe patients. The literature is extensive, the assessment strategies exist, and diagnostic tools are out there. I see you, I believe you, & I believe in you -Ross

06/02/2026

If we didn’t think to ask for a Referral to an orthopedic surgeon before getting the front rib section, it could’ve thoroughly ruined This patient’s life

Don’t expect your provider to do what’s right for you. Make sure that you’re looking out for yourself and getting what y...
06/02/2026

Don’t expect your provider to do what’s right for you. Make sure that you’re looking out for yourself and getting what you need done in the right order.

04/18/2026

300+ hrs to beat an insurance denial fo life-saving surgery for arterial thoracic outlet syndrome for Clover Fields

04/17/2026

If your primary care doctor is telling you your severe joint pain and fatigue is just "anxiety" or "psychosomatic," you need to hear this. Ehlers-Danlos Syndrome is a real, incurable genetic disease. The medical bias is staggering—men get diagnosed in months, while women are routinely dismissed, denied care, or even institutionalized. You are not crazy, and you are not alone.
Full video linked down in the comments. 👇

04/09/2026

If this video saves on person’s life, it was all worth it. This is a full explanation of why Clover needs life saving surgery, why the only surgeon who can do it is at Johns Hopkins in Baltimore, & why we need to raise enough money to pay cash, or at least cover or bills while I’m fighting to get her this surgery before it’s too late.

I’m tired of being misunderstood or disbelieved. I know it’s all complicated and hard to understand—so hopefully this video explains exactly the dire situation we face, why I put everything on the line to get Clover care, why I’m workin on getting her care 60+hrs a week instead of working a full-time job, and why we still need help from friends & family to cover our bills until I get Clover this survey.

Tysm to everyone who has been there for us, supported us, donated to the GoFundMe, believed us, and given kind words of love and support.

If it wasn’t for you, we wouldn’t even have a diagnosis yet and that means the world. But we still need your help. Anything counts. Ty -Ross & Clover

GoFundme pinned in comments

Clover Fields with a happy customer and with some famous underground tattoo artists that are now colleagues. Clover buil...
04/09/2026

Clover Fields with a happy customer and with some famous underground tattoo artists that are now colleagues.

Clover built an entire Celebrity Scratcher tattoo career from nothing after moving to LA 2 years ago—and she did it while having arterial Thoracic Outlet Syndrome.

She has fans. She has industry clout. She even got offered residencies at 2 of the best fine line tattoo studios in the country.

But now, she can’t even tattoo part time—she finally got a very legitimate diagnosis for Arterial Thoracic Outlet Syndrome from the renowned Cedars Sinai Medical Center—signed off on by Dr. Azzizedeh (one of the nation’s top vascular surgeons)—It’s a serious condition with a real and constant imminent thr3at to lif3 & 1imb.

The amount of resilience and the amount of p4in Clover powered through is profound. She did something that’s almost impossible even for a healthy person in their prime!—this is exactly the kind of thing is that make it easy to fight for Clover.

There’s only one surgeon in the country that can do the surgery she needs. While we are fighting insurance, what we really need is money to cover our bills. But ideally, we raise $100k to just book the surgery immediately. Every day we wait is another day Clover could lose her arm.

Tysm everyone who has already donated. Without your help we wouldn’t even have gotten her the diagnosis yet for her right arm & shoulder. But there’s a lot of fight left to go in the journey to getting her life saving surgery, and we need your help—anything counts.

GoFundme link pinned in comments.

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