Hello, hello, hello!! My name is Ivan, though most may know me as Romeo Lips.

As many of you know, I’ve been struggling with chronic pain for a long time, a major one being instability and excruciating pain in my joints. I’ve tried everything to help manage this, and while some things help, I am still having flares that leave me unable to walk for sometimes days at a time, flares that have cost me my day job. While I’ve tried so many forms of relief, ultimately I need to know exactly what is causing this so I can get proper treatment and stop it from potentially worsening. My mobility is my livelihood and proper treatment has the potential to preserve what I have and potentially even restore what I’ve lost.

I’ve seen numerous doctors and been tested for numerous things and all signs and doctors’ suspicions point to Hypermobile Ehlers-Danlos Syndrome (hEDS). Unfortunately, very few doctors have enough knowledge of hEDS to either properly diagnose it or rule it out. However, I was given an opportunity to see a geneticist who is highly experienced in EDS on Oct 15th, who has the knowledge and resources to give me these answers.

The problem is, it will not be covered by insurance.

For transparency’s sake, an initial consultation visit is $600, a follow-up is $325, and testing is $250-300. There are also travel expenses as my appointment is in Westchester. I’m currently trying to save enough for the initial visit, one follow-up, and testing.

As vulnerable and frankly embarrassing as it is to open up about these medical struggles, let alone ask for help with medical expenses when everyone is going through it, I have no other choice.

I appreciate your support, even sharing goes a long way