What this blog is about

My journey with autoimmune small fiber neuropathy

This is a journal about my journey with autoimmune small fiber neuropathy, a rare and heavily under-studied disease.

This is me

My name is Julia. I'm a pharmacist and scientist from Switzerland. I specialized in public health and database research, and am currently working as a researcher, studying rare adverse drug effects using health databases. 

My training in reading scientific literature, and the fact that I have access to them due to my job have helped me tremendously in dealing with my disease.

Besides my work, I love many other things. I have always travelled a lot. I'm married to Steve, who is from Australia, so half our family lives across the globe. I have also lived in the US, in Boston, for about 2 years. I love being with my friends, reading good books, cooking, and now blog writing.😃

I also like being active and doing outdoor things, but there have been times, when this has been difficult due to my neuropathy. 

This blog is about small fiber neuropathy

I was perfectly healthy until one day in 2014, when I suddenly started to have very strange neuropathy symptoms, such as pain in my feet and hands, which rapidly got worse. 

Since then, it's been a windy road of finding specialists, treatment options, and many ups and downs in every day life. Click here if you wan't to learn more about small fiber neuropathy. 

I now have a great doctor, who is specialized in my disease and treated it with different immunotherapies. But to get to this point, I had to dig into the literature myself and push for treatments and specialist appointments over and over and over again. 

Why did I start this blog?

I started this blog primarily as a way to keep my friends and family updated on how I'm doing, and what is going on with my symptoms and treatments.

Dealing with a rare chronic disease can get complicated and time consuming, and before you know it, it turns into a pretty complex part-time job.

Often times there is no straight-forward answer to questions like 'how are you'? or 'is the treatment helping'?

Of course it is greatly appreciated that everybody shows interest and wants to help, but it can be very difficult to actually explain in detail what is going on on a daily basis. Often times, I don't even really know what is going on and what will happen next, because it is all trial and error.

This blog will be a place where I can write everything that is going on in more depth, and everyone who is interested can read it.

I am hoping it will have a few good side effects. Over the years I have gained a lot of knowledge and experience on small-fiber neuropathy. I was also lucky to meet many experts working on finding treatments and diagnostic tests for it. I hope that sharing this knowledge will help other people with the same condition.

I'm sure that there are many people out there, who have symptoms of small-fiber neuropathy, but have been told it was all in their head, or that they may just be dealing badly with stress. All this has happened to me in the beginning as well.....

Finally, I also think that writing about my life with small-fiber neuropathy will help me sorting out my own thoughts about my disease. Many people have told me that writing down their story helped them to gain a new perspective on things. So lets see how this goes.....😃

What am I writing about?

I write about my everyday life with autoimmune small-fiber neuropathy, and about which meds and treatments are working for me, and how we convinced health insurance to pay for the often expensive off-label treatments. I will tell you how my symptoms started, what tips and tricks I have learned, and how I found a good neurologist who was able to give me a diagnosis. 

I will also provide information on what autoimmune small-fiber neuropathy is, what is known about it, and what research efforts are being undertaken to better understand and treat this disease. Obviously, this is not proper medical information. It is just my experience with this disease.

If you find my English writing difficult to read, just opt for automatic Google translation using the translate function on the right.

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