Lauren’s Story

Lauren in hospital bed

The beginning In June 2019, I was overcome with terrible lower back pain. I was referred to a spinal specialist who then referred me to a gynaecologist and after several MRI scans, it was decided that the problem was located between the bottom of my back and my pelvis. After yet another MRI scan, I […]

Living with Hereditary Amyloidosis

Rosaline Callaghan Smiling

I was introduced to amyloidosis in 1986 when I was 26 and back in Ireland for a holiday from Canada where I had gone to work as a nanny. My paternal aunt, Polly, had died in 1982, at the age of 58, after a long drawn out illness that had baffled the doctors. She was […]

One in a Million

Dafydd baby

Dafydd was a happy smiley baby and despite a difficult birth (born two weeks early by emergency C-section), he had no obvious problems. He developed normally and although we thought he was a bit slow with some things, and was a good sleeper, we had no idea anything was wrong until Dafydd got to about […]

Abigail’s story

abigail selfie

My name is Abigail and I am 31, currently living in the North East of England with my husband and our two beautiful boys. THE BEGINNING My journey started in 2019. I was experiencing pain and called up for advice, not knowing that this phone call would change and save my life. I got rushed […]

Will’s Story

Will sitting in hospital bed smiling with thumbs up

WILL, THE CAVERNOMA SAILOR In April 2019, Will’s life came crashing down. He was 12 and enjoying his life, particularly with his love for sailing and school. We were on holiday in France when he collapsed and had a prolonged seizure. He was rushed to the local hospital and then after a CT scan transferred […]

Valerie’s Blog

Valerie in the park with coffee

In July 2018, nearly two years after the birth of my first child, Douglas, I was diagnosed with a very rare condition called Pregnancy Associated Osteoporosis (PAO). About six weeks after Douglas was born, I fractured two vertebrae. I was rendered immobile and in crippling pain. I couldn’t bend over the crib, I couldn’t pick […]

PAM’S STORY

Pam's travel bag

I am incredibly lucky. Although I’ve got a diagnosis of Schnitzler’s syndrome, a rare autoinflammatory disease, it’s an unusual one in that there’s a medication that controls my symptoms entirely and which the NHS is willing to provide: Anakinra, or Kineret. (It’s also unusual in being adult-onset, as most patients are over 50). The drawback […]

MEGAN’S STORY

Megan Sargent and her daughter Isla and sister

My name is Megan, I’m 36 years old and live in Southampton. I am married to Joe and have two daughters, Isla and Edith. I am a keen runner and baker. As a family we love getting away in our campervan and exploring the UK and Europe. My daughter Isla was diagnosed with Charcot-Marie-Tooth (CMT) […]

MARY’S STORY

Mary ready to climb an indoor climbing wall

I’m Mary, I’m 22 and I live in Wiltshire. I have Ehlers-Danlos syndrome (EDS), a connective tissue disorder that affects my body in a lot of different ways. My joints are fragile and dislocate easily, so I normally use crutches or a wheelchair to get around. It also affects things like my blood pressure control […]

CHRISTINE’S STORY

James in chef's hat and apron with a friend in the kitchen

In 2007, we welcomed our first son into the world after a healthy pregnancy. On our visit to the hospital to see the maternity ward, we were shown all the equipment to help bring your baby into the world safely. The midwife pointed to an emergency bed and alarm and said: ‘you will not need […]