Why I Haven't Been Able to Go to Trento Lately:
My Diagnosis of Hypermobile Ehlers-Danlos Syndrome

A lot of you have been asking me when I am going back to Trento to do research. And for the past couple of years, I've been having to make so many excuses, saying it was due to 'health problems'. Well, this past week, at age almost 70, I FINALLY was diagnosed by a specialist rheumatologist.

What I have is hypermobile Ehlers-Danlos Syndrome (hEDS), a genetic disorder (considered 'rare') that renders the body incapable of producing 'normal' connective tissue and collagen. Connective tissue includes cartilage, skin (including skin of inner organs), blood vessels, and essentially anything that contains collagen (including brain matter). The condition causes chronic pain, loose/unstable joints, recurring subluxations/dislocations, fibromyalgia, and a long list of associated comorbidities, which impact virtually ever aspect of life.

Ever since I was a child, I have had to deal with subluxations (jaw, ribs, shoulders, hips, knees, neck, you name it), suddenly falling down (anywhere and everywhere) for no reason, unexplained allergic responses, extreme (and sometimes life-threatening) immune responses to prescription drugs, blood vessels that refuse to let doctors take blood from them, sleep problems, gut problems, dental problems, balance problems, heart problems, eye/optical problems, gynaecological problems, and of course the chronic pain and fatigue that goes with all of that. More recently, I have developed pretty bad osteoarthritis in my hands/thumbs, no doubt due at least partially to the repeated subluxations in my thumbs.

Because this genetic disorder is not well-known by mainstream doctors (and not even by all rheumatologists) I have had to endure nearly 7 decades of being misdiagnosed, or being told 'nothing is wrong'. So while it is quite a big deal to be told I have a genetic condition at my age, it is actually also quite validating to finally be told that ALL of the weird symptoms I have endured can be boiled down to this one thing. In some ways, having a 'label' to put on it is very liberating, even though I understand there is no 'cure' for this disease/disorder.

If you wish to find out more about Ehlers-Danlos Syndrome, I invite you to check out their charity's official website at https://www.ehlers-danlos.com/what-is-eds/
 

I kindly request that you do not send me any medical advice or health suggestions. I am only telling you about this because I wanted to explain why I haven't been able to go to Trento over the past few years. Please be assured that I am working very closely with my GP, rheumatologist, physical therapist and a wonderful osteopath. I am also waiting for a referral to an occupational therapist who will help address the arthritis in my hands.

But right now, kindly understand that there is absolutely NO way I can travel anywhere. I also do not wish to say 'maybe next year'. I really have no idea if or when I will be strong enough to travel abroad again. I do not wish to build up people's hopes, and then end up breaking my promises... again.

The only thing I WILL promise is that I will continue to work on my physio exercises (which are very hard for me at the moment, but I trust they will gradually become easier).