Routine dentist trip uncovers rare blood disorder

Shirley Manser and her family

When Shirley Manser was diagnosed with amyloidosis 12 years ago, she and her husband Arthur travelled from their home in South Australia to Brisbane for what was then groundbreaking treatment for her disease – a stem cell transplant.

At that time, a Brisbane team of specialists were offering new hope to Australians with amyloidosis through the use of stem cell transplants.

Shirley was first diagnosed with amyloidosis after she visited her dentist for a routine check-up.

“My usual dentist was not there on that day and the locum dentist that saw me noticed a lump under my tongue,” Shirley said.

“I hadn’t felt the lump and I often wonder if that particular dentist had not been there that day whether it would have been discovered.”

Amyloidosis and the tongueShirley was sent for a biopsy and then travelled 250km from her home in Berri to a specialist in Adelaide who requested a heart biopsy.

“I felt really uneasy about a heart biopsy and after doing some research, I emailed someone from the Mayo Clinic in America who advised me not to have a heart biopsy,” she added.

“The Mayo Clinic also recommended that I see a haematologist in Brisbane who had a special interest in amyloidosis.

“That’s how I came to be treated in Brisbane. My local doctor sent my details to The Wesley Hospital, where I saw a haematologist who told me he would be happy to treat me and that he would recommend chemotherapy and a stem cell transplant.”

Further tests revealed that there were no other organs affected by amyloidosis apart from Shirley’s tongue.

“I was very fortunate to be diagnosed early and am very grateful to that locum dentist who found the lump under my tongue and encouraged me to have it checked.”

Shirley and Arthur moved to Brisbane while Shirley had chemotherapy and her stem cell transplant.

“We were so grateful to be provided accommodation at ESA Village, which was then located next to the Mater Hospital, for the 16 weeks we were in Brisbane,” Shirley said.

“We thought the village was an amazing place. It was wonderful for Arthur to have the extra support of the Leukaemia Foundation staff and other carers who understood what we were going through.”

During his stay at ESA Village, Arthur attended some of the Leukaemia Foundation seminars where he spoke to a dietitian who was able to give him tips on how he could help Shirley build up her weight and strength.

“Those weeks of treatment were very difficult and I lost a lot of weight. I would feel sick at the smell of hospital food – I think I could smell it the moment it left the kitchen,” Shirley said.

“I found that I could stomach yoghurt, so it became an important part of my diet. Little by little I began to get my strength back and I was eventually able to go home.”

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Shirley regularly saw her specialist in Brisbane for five years after her diagnosis before being referred to a specialist closer to home in Adelaide.

“My amyloidosis was in remission until 2012 when it reappeared in my spine. It was successfully treated with radiotherapy and since then I have been amyloidosis free,” she said.

Arthur and Shirley have both found ways they can now help other patients and families. Arthur is a volunteer driver for the Leukaemia Foundation and transports patients to and from treatment, while Shirley helps organise the catering for the Foundation’s support seminars.

“This is our way of giving back and showing our appreciation to the Foundation for all that was done for us.”

Shirley said there were times during her treatment when she wondered if she would ever make it home. “I just kept focusing on my family – I wanted to see my three children get married and have children,” she said.

“That dream has come true; my children are all married and I now have nine beautiful grandchildren. What more could I ask for?”

Shirley’s story first appeared in Amyloidosis News, our free publication for everyone affected by amyloidosis. It’s available for download or subscription.

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