Living with Addison's disease
- 8 February 2013
- From the section Health
Carrying home bags of powdered pigs' glands every week with her father meant a new lease of life for 10-year-old Hilary Richardson.
Back in 1955 in Canada, it was the only treatment available for Addison's disease. A decade earlier the condition would have killed her.
It was her job to put the precious powder into capsules which were kept in the fridge.
Addison's affects around one in every 15,000 people and is caused by a lack of steroid hormones in the body. These are normally produced by the adrenal gland, but damage can cause levels to drop.
The disease is normally caused by the body's own immune system turning on the adrenal gland, but cancer and tuberculosis can also trigger the condition.
The impact on the body can be significant. One steroid, called cortisol, is involved in controlling how much water there is in the body as well as helping to fight inflammation. Another, aldosterone, regulates salt and water levels and blood pressure.
Without properly-functioning adrenal glands the body cannot cope at times of stress - such as surgery, trauma or serious infection.
Carol McKay was diagnosed with Addison's disease three years ago. She had noticed that scratches turned to brown scars instead of pink - a sign of Addison's.
"One day that October, I felt as if what was 'me' was ebbing from my legs and arms, to regroup in my abdomen, chest and head, and even then, making ready to leave, and leave the husk of my body behind."
Doctors realised what was wrong and saved her life.
She now teaches creative writing and has written a book - Second Chances: true stories of living with Addison's disease.
One contributor is Jasmine Salmon, who was diagnosed with Addison's following the birth of her first child.
She said: "I couldn't stop bursting into tears. I was worried about the diagnosis and it felt so wrong to be away from my baby, he was only 12 days old.
"All my strange pregnancy symptoms suddenly clicked into place, the strange tan, the darkened scars and gums, the terrible sickness, the low blood pressure."
The condition was discovered by Dr Thomas Addison in London in 1849. Jane Austen, John F Kennedy and Osama bin Laden are all thought to have been affected.
Following Kennedy's assassination in 1963, pathologists found "almost no adrenal tissue" according to an article in the Annals of Internal Medicine.
Now patients are treated with cheap steroid tablets, unchanged since Hilary Richardson was diagnosed back in the 1950s.
"Luckily within a year my father was able to obtain hydrocortisone pills while on a trip to the US and before long pills became available in Canada as well and my treatment now seemed very easy."