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Claudia Hammond: Hello, I’m Claudia Hammond and this is Health Check from the BBC. On
today’s program, a rare condition which often isn’t diagnosed until it’s an emergency.
Carol McKay: Because it’s quite a rare disease, doctors don’t have it at the forefront of
their mind when they are checking you and they think you’re all right, and then suddenly,
you have a catastrophic collapse, your blood pressure is low, blood sugar is low. And you
become very, very seriously ill.
CH: We hear experiences of Addison’s disease from around the world. When you go to your
family doctor to find out what’s wrong with you, they’ll listen to your symptoms, examine
you and then order any test they might need. But some conditions, especially when they
are rare, are harder to diagnose than others. And with Addison’s disease, which only affects
four in every 10,000 people, many don’t discover they’ve got it until it’s an
emergency. It’s an autoimmune disease that disrupts the production of hormones by the
adrenal glands and although the condition is life long, it is treatable with steroids.
When Carol McKay was faced with the condition, she used social networking to find out how
other people managed. The result is a an ebook called “Second Chances”, where patients
from Belgium to South Africa and Australia to Canada recount their stories of living
with Addison’s disease. When I spoke to Carol, she told me how she eventually realized
what was the matter with her.
CM: I knew I had been not well for about a year. I felt anaemic, I had no energy. I was
carrying on with my life, but I just had no energy. I went to the doctor to get checked
to see if I had anemia or something else, and they did a few blood test and didn’t
pick anything up. They were looking for thyroid and other things like that, because if you
have one autoimmune disease, you are more likely to have another one. And I have Celiac
disease, which is an autoimmune disease. So, they were looking for things, but didn’t
see them. And then, a few months later, I was checked for my blood pressure and it was
surprisingly low, but not dangerously low at that stage. So, again it didn’t ring
any bells with the doctor. And then one weekend, I got a tummy bug, and my body just couldn’t
come back from that and I was losing feeling in my arms and legs and in my lower jaw. And
I was taken to hospital and fortunately, the medical stuff there recognized it and I was
treated very quickly. It’s a very simple disease to treat because it’s like thyroid,
you need replacement hormones.
CH: And looking at some of the experiences that people recount in your book, they do
seem to be often, almost quite close to death by the time they get to diagnosis or certainly
very seriously ill and… I was struck by the story of Jasmine, who is from the UK,
and she was diagnosed just 12 days after her second baby being born, which must have been
an appalling situation.
CM: Yeah, she’s wonderful. And her story is scary, but it’s actually really uplifting
because… Well, she had suffered terribly. It was her second pregnancy. She knew what
to expect in her pregnancy. But this one was really bad, she just felt really awful. And
then after the baby was born, she was still really, really exhausted, more tired than
she thought she should have been. But what’s uplifting about Jasmine’s story is that
her doctor thought about her after she had been to see her, and actually turned up at
her door and said, “Look, we’re really concerned. I’ve looked at your blood results.
Please go to the hospital tomorrow morning and get checked out.” And then an hour later,
she actually phoned, the doctor was on her way home, and she had suddenly realized. The
Addison’s light bulb came onto her head, and she thought, “Oh, that’s what it is.”
And that’s what saved Jasmine’s life.
CH: So, she was lucky that she had such a good doctor…
CM: She was…
CH: She suddenly made that connection and guessed what it was.
CM: She was very lucky.
CH: What made you want to collect together all these stories and publish them as an ebook?
CM: Well, I was very shocked by having my own diagnosis, because it’s quite rare.
I needed to hear how other people had coped with it. So, I joined the Addison’s Disease
self-help group, which is a charity in the UK and I found a lot of support from them.
I also found support from Facebook. I’m a writer and I teach creative writing, and
therefore, I wanted the whole story. I liked to hear what led up to it, how had they coped
with the diagnosis and how they had a normal life afterwards? So, I set about to compile,
I got 16, including my own, 16 stories. And they came from the States, Canada, Belgium,
the UK, South Africa, Australia, South Korea. And I was really, really pleased to hear all
these different stories. Everybody’s different, but they all, as you said, most of them were
very close to death. It helped me, reading them, and I hope it helps other Addison’s
sufferers, but it also raises awareness, and that’s really important to me.
CH: One of the stories is from Hilary, and she lives in Canada and was diagnosed right
back in 1955, and she was only 10 years old.
Speaker 3: For some time, I had been adding teaspoonfuls of salt to every meal. I also
ate very meagrely. Not only was I scrawny, but winter or summer, my skin was a dark color
which looked odd with my fair hair. “Your elbows and knees are still dirty, you haven’t
scrubbed them well enough,” my mother would complain. Little did she realize that the
dark skin, the craving for salt, and the reluctance to eat were all symptoms of Addison’s disease.
I was often ill and had missed a lot of school. My doctor thought a routine tonsillectomy
might help, but I didn’t come around from the anaesthetic. It was after dark on Tuesday
evening, when an internal medicine specialist climbed the grey limestone steps of the hospital.
I’d been in a coma for more than three days, and had not moved nor opened my eyes since
my operation. The specialist hooked up an IV containing a different substance to see
what would happen. This is how I obtained my diagnosis.
S3: In 1949, Cortisone in pill form was produced commercially. But in 1955, in our small town
in Canada, we couldn’t get these tablets. Treatment for me was desiccated pig’s adrenals.
Every week, my father and I would go to the home of a man who had obtained the adrenals
from a slaughter house. We carried the precious brownish grey powder home. The quality of
the material varied week to week. Sometimes it worked very well and sometimes hardly at
all. Luckily, within a year, my father was able to obtain hydrocortisone pills on a trip
to the US. And before long, pills became available in Canada as well and my treatment now seemed
very easy.
CH: So, quite a dramatic start for Hilary there in finding out that she got the disease
and what happened to her.
CM: Yes. She was lucky. And if she’d been born 10 years earlier, she would probably
have died. People still do die nowadays, even in the developed nations, they still die from
it because it’s not picked up in time. And I’m sure there must be people all around
the world who don’t have access to modern medicine easily who still suffer from it,
but the pills themselves are fairly inexpensive.
CH: So, it’s more about the awareness of the disease than the pills themselves and
access to those.
CM: Exactly. Yes.
CH: It’s that people have gotta get that diagnosis somehow.
S3: Yes.
CH: And what impact has it had on you life now that it is well controlled for you?
CM: It’s well controlled, but I still don’t have a lot of energy. For example, to come
to this interview today, I had to take an increased dose of my medicine to cope with
the stress.
CH: Really? That’s quite interesting.
CM: Yeah.
CH: So, you’ve got to plan in advance when you think you’re gonna be stressed, which…
CM: Yes.
CH: You can do if it’s an interview ’cause that’s arranged in advance. But everyday
life’s not quite like that, is it?
CM: No. Because even a simple bump in a car, not even a serious bump, but something like
that can cause the body to go into shock.
CH: And then what would happen to you? So if you hadn’t touched your dose today and
were then feeling anxious, what would happen?
CM: It would affect my blood pressure and my blood sugar and I would start to get weak
and collapse. In a more serious case, if I fell and broke my ankle, for example…
CH: Yeah.
CM: Then, I carry an emergency injection kit, so I have to give myself an intramuscular
injection, to give myself a large dose, so that I don’t just fade away and die, really.
CH: Carol McKay and the latest version of her ebook of stories, “Second Chances”,
is out this week. Next week I’ll be in Norway for the BBC and so Dr. Kevin Fong will be
here…