My name is Sean, and my Amyloidosis story began in 2011 when I started  experiencing itchy skin.

The doctors didn’t know what was causing this itch, so I was given Pervaryl lotion, a treatment for fungal infections and when this did not do any good a scabies cream which didn’t work either.

Lesions began to appear on both legs and on my stomach and these affected areas have grown in size over the years. I finally received a diagnosis of Lichen Amyloidosis in 2021 when I was fortunate enough to find a GP with some knowledge of this disease. He took a biopsy and through his diligence my diagnosis was made,

As I had never heard of amyloidosis before and soon found that nobody else seemed to have either, I turned to google and was immediately devasted by what I read about amyloidosis in general. With more research I have now come to realise that although this type of amyloidosis is not terminal, my life has been a misery for fourteen years and I understand will be a lifelong journey of discomfort and grief and poor quality of life.

My GP told me that the disease appears to have a higher occurrence in persons of Chinese ancestry, and this would fit my family profile.

I still haven’t been offered any treatment that really controls the itch or cures the amyloid.  The only time I get any real peace is when I take antihistamines. I find sleeping at night difficult.

I am on a waiting list to see a dermatologist regarding laser treatment  but have been told the waiting list is long .

This itch has destroyed my life social life, my ability to work and my personal life. I have lost 2 women because of it. It is very difficult to join any social clubs or mix with other people.

I am meticulous with my hygiene, but  the itch is extreme, and the creams are useless. It starts when I wake up and just continues throughout the day until I take antihistamines around 4- 5pm.

I would love to hear from anyone with Lichen amyloidosis  and learn whether they have  found anything to help with the itch.

If there are any clinical trial for Lichen amyloidosis being run in Australia I would love to hear about them.