My name is Vera, and I would like to share my story. A story about my ongoing search for a diagnosis—a desperate search, that so far has no end.

It started in May 2022, when my vision suddenly changed dramatically—everything went foggy —it has been that way ever since. After six months with no improvement, I ended up in the emergency room where they told me I had serious sicca (dry eyes). I was given eye drops, but instead of alleviating the symptoms the drops came out of my eyes like glass fibres (skin flakes).

I turned to my own research and read that you should drink more fluids, so I started doing that. It did help to some extent, but my vision remained blurry.

An array of building symptoms

Beyond the dry eyes and blurry vision, I have also experienced sudden weight loss. I always weighed 75 kg, and suddenly I was down to 59 kg. I have always been a big eater and enjoy two glasses of wine a day and sometimes a liqueur with coffee—so this weight loss had no explanation.

Next, my skin turned dry and flaky, so I started drinking even more water to try and combat this. This did improve briefly, until my lips, mouth, throat, tongue and oesophagus started to swell, and I started experiencing foam and mucus in my mouth. My tongue turned white in colour.

All over my body flakes kept—and still keep—falling off. That, in itself, is manageable —it’s the mouth pain that is the most impactful. Every second I have an unpleasant taste in my mouth, and I have great difficulty eating. The skin on my face literally tears off and it burns terribly.

Since I started drinking increased water, things have eased slightly so the weight loss has stopped, but I can still only eat very little at a time due to the pain.

The dental hygienist I have been visiting for years was shocked when they saw me. They said they had never seen anything like it. I was always very careful with my teeth, but now my gums and palate are completely ruined. It burns and flakes every day; it feels like it stretches and shrinks again. I permanently feel like I need more fluids, but it’s hard to keep up because it hurts so much to eat and drink, and because of such a dry nose cannel everything smells terrible.

I’ve applied kilos of cream but that doesn’t help much either, everything reacts directly to moisture.

This is my new reality.

My changing daily life

I’ve always been an active person. I was always enjoyed doing odd jobs, painting, and gardening. I’m naturally active and creative. I painted the outside of my own house. I went out for dinner every weekend. I spent whole summers on our lovely boat, which I cleaned myself. All of this has changed now.

As it is now, it is unbearable. I live from day-to-day. Painkillers don’t help, and I cry almost every day from the pain. I have to wash away all the food down when I eat because it gets stuck in my throat and the food sticks to my teeth.

The rheumatologist I visited tested for a host of autoimmune diseases. His answer: “It is reality, but biologically inexplicable.” I showed them my hands and they observed that they “looked like they had been in the water all day”.

This is all so isolating. The people in my neighbourhood and surroundings really don’t recognise me anymore and just walk past me. My husband says, “It looks like you’ve run out of fluids”. It feels as if everything has shrunk and is now expanding again, and the skin is bursting off.

It’s episodic—the skin becomes damaged, then the sores get smaller and smaller, and eventually heal, until it becomes normal skin again.

Where are the answers?

All the tests have been done I am told. The specialists admit there is something wrong, but they all send me away. They do their job per department and when all the results are in order, I can go back to the GP, and we start all over again. I have been tested for Sjögren disease by the ENT doctor, but it did not lead to a confirmed diagnosis.

I’ve been seen by a specialist dentist where it was confirmed that my saliva is like water with a lot of foam and that I should worry about my gums. His observation was that I looked like someone who had been taking medication all their life—but that does not apply.

My reality is taking its toll. The worst thing is—I can’t stop it. I can’t find anything to bring relief. I only have peace with a few hours of sleep. I am so tired of the pain. I am at my wits’ end and feel that I will not overcome this.

I have been trying for a year and a half and still my eyes and skin are flaking, and the pain is unbearable. It feels like there is no prospect of improvement while all the questions go unanswered.

I feel I am not taken seriously by the doctors; the pain is invisible to them. I am just expected to learn to live with it.

I would like to call out to people/advocates/specialists who are interested in this and can take the time to help me find the answers I am desperately searching for.

I pray that I can eventually get the appropriate help and treatment, and one day be understood and helped.

As it is now, life no longer holds the same quality for me.

I am only 60 years old, and I fear this will dominate the rest of my life.

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