Clown on a tightrope

The story of Maartje

Two and a half years of misery, nausea, internal turmoil, fatigue, extreme chills, weight loss, and pain. Two and a half years of being turned inside out without any real diagnosis;  two and a half years of doctors treating me like I am a hypochondriac. Sudden kidney failure had me in the office of a nephrologist who sat me down and grilled me, asked every question she could think of; a comment I made of having positive ANA markers but no lupus made her order a complete autoimmune panel.

Finally, a diagnosis.This was the first female doctor I dealt with. Coincidence?

I had no idea what scleroderma was. Sclero- what??  I went home, glad that I did not have lupus; when I started reading about scleroderma I was not that happy anymore. 

Diffuse scleroderma is a severe systemic disorder,   the definition from Orphanet says it all : “Diffuse cutaneous systemic sclerosis (dcSSc) is a subtype of Systemic Sclerosis (SSc; see this term) characterized by truncal and acral skin fibrosis with an early and significant incidence of diffuse involvement (interstitial lung disease, oliguric renal failure, diffuse gastrointestinal disease, and myocardial involvement).”  Basically, excess collagen production causes my skin and organs to first tighten, then harden and fail.

This is an orphan disease, there are no medications specifically made for dcSSc. I am now two more years down the road, and dealing with insurances has been a nightmare. Sure, there are meds that help some, but they are meant for illnesses I do not have, so they may not be covered; I have prescriptions for medications I cannot buy in my country. 

I feel like a clown on a tightrope, juggling for my life.

But I am blessed, in a sense, I am one of the slow progressing cases. Some people die within 5 years of their diagnosis, and it is a horrible death;  it does not look like I will die soon but it is hard to say what shape I will be in when I do, it is not a pretty illness.  I am sixty years old and quite beautiful and trying to make the best of my life. That is all I can do.

My foremost wish is that insurances in my country would have more understanding and give more leeway for people like me.  It would make life so much easier.  An insurance claim I put in was denied by one insurance  ” because this was a skin disorder”… such ignorance is scandalous.

Somehow I have a feeling I am not the only person here saying that. Rare diseases are often misunderstood.  We have rights and should not have to go through hell to be able to get what we need.  So I fight. I fight for my health and that of others in my situation. I participate in trials. If there is no cure for me now, then I will do my best to help find the best medications for now and for the future and I would like to encourage all of you to do the same. This is our fight for understanding, for our rights, and for acceptance. Do not give up on that. It is so tempting to just sit back and feel miserable, but it will make you feel empowered if you help your cause.

Good luck to you all.