Patient Experiences

/Patient Experiences
Patient Experiences2019-08-06T21:01:17+00:00

Patient Experiences

Tell me a fact and I’ll learn. Tell me a truth and I’ll believe. But tell me a story and it will live in my heart forever.
North American Indian proverb

Personal stories written by those of you living with all types of amyloidosis are extremely important. These stories raise awareness about the different types of amyloidosis while educating us all about what like to live with this group of rare devastating diseases.

Please keep sending your stories to be published on the web site.
Use the form on the right if you have a story you think others might appreciate hearing and we’ll get back in touch with you.

The power of storytelling | The Health Foundation

Submit a Story
reCAPTCHA

Coral – My 17 years Living with AL Amyloidosis.

My Name is Coral and my symptoms started on boxing day 2001 when I woke with swollen ankles and a pain in my chest. A visit to A&E, admission to hospital and a kidney biopsy confirmed the diagnosis of AL amyloidosis. I was 39 years old and had until then been very active and healthy with 2 young children aged 9 and 13. We had never heard of amyloidosis [...]

By |November 22nd, 2019|Patient Experiences|

A Difficult Journey to a Diagnosis of AL Amyloidosis

“Life need not be easy, provided only that it is not empty.” Lise Meitner. In 2014 I was diagnosed with smoldering myeloma. I had various blood tests and treatment for lymphoedema. I did not experience any major lifestyle issues, walked every day, rode a bike regularly and enjoyed the occasional drink.During 2015 the situation started to deteriorate. With my smoldering myeloma I was treated for anaemia, had a bone [...]

By |October 22nd, 2019|Patient Experiences|

From despair to hope: Neil and Linda Gibson’s experiences living with AL amyloidosis.

My name is Neil Gibson I was diagnosed in 2014 with stage 3 AL Amyloidosis. I had never ever heard of amyloidosis before this. My prognosis was not good, a matter of months and if it hadn’t been for the CCC, Carmel in 2E outpatients in PAH, convincing me to start chemo, as I was a bit reluctant in the beginning, I would not be here today playing golf [...]

By |September 22nd, 2019|Patient Experiences|

Vince Represents Australian ATTR patients on the world Amyloidosis Alliance

I am Vince O’Donnell. I have a slow but fatal genetic condition known as hereditary ATTR (ATTRv) Thr60Ala Amyloidosis with cardiomyopathy, once known as Familial Amyloidosis Cardiomyopathy (FAC) or familial amyloid poly neuropathy (FAP) Hereditary ATTR is a condition that can be passed down to male or female children from the mother or father with a 50% chance of any child receiving the mutated/abnormal gene. So even if a [...]

By |September 20th, 2019|Patient Experiences|

AL, early remission and a heart transplant – Robin’s Story

My journey - from an active 57 year old cycling 250 km a week, completed his first triathlon, trekking in Nepal and Patagonia, an avid skier and traveling the world - to a 62 year old recovering from a heart transplant following a 4 year battle with AL Amyloidosis. As in many cases, the diagnosis of my Amyloidosis extended over 12 months and included many misdiagnoses which were not [...]

By |August 4th, 2019|Patient Experiences|

Laurie O’Donnell’s story

Laurie O’Donnell wrote his moving story in October 2017 in the last few weeks of his life. Laurie O’Donnell was the  brother of Vince O’Donnell.  My name is Laurie O’Donnell.   I am 65 years of age and three and a half years ago after having neuropathy problems (peripheral nerve damage to hands and feet) and shortness of breath it was suggested that I go to a heart specialist whereupon [...]

By |July 22nd, 2019|Patient Experiences|

Ann’s story

I was diagnosed as a child with a disease called bronchiectasis. This chronic disease eventually caused my AA amyloidosis which affected my kidneys and eventually led to kidney failure. My kidneys had been failing for nearly 20 years so when in 2005 I was told I needed dialysis I thought I would take this all in my stride. How wrong I was as I suffered a huge grief reaction [...]

By |May 3rd, 2019|Patient Experiences|

Geoff and Ros Phillips’ story living with hereditary amyloidosis

Geoff's story Geoff Phillips has a type of hereditary amyloidosis known as AGel or Gelsolin amyloidosis. My first possible problem with amyloidosis was around 14 years ago when I had a hospital visit with a bad case of Cellulitis. Blood test showed a problem in the blood tests, no one knew what it was so they said don’t worry it must be an infection. This happened another 4 times [...]

By |March 22nd, 2019|Patient Experiences|

Crystal Lobban – My Father’s Story

The upheaval of Amyloidosis - Raising awareness in honour of my Dad My Dad was a very fit, healthy and active man who spent his days farming his beloved Angus cattle herd. The constant maintenance of keeping my parents farming properties in top shape had him out and about every day. He was also a very active member of the Victorian Farmers Federation and travelled around the state to [...]

By |March 22nd, 2019|Patient Experiences|