Living With Acromegaly
WHEN retired dental nurse Alexia met an old friend recently, all she got was: “Why do you look so different now?”
If you’re meeting Alexia for the first time, nothing about her will strike you as out of the ordinary. It is only after she shows you a picture of her old self, that you might be inclined to think she’s someone else altogether.
As compared to the attractive woman staring back from the photo, Alexia's nose is wider; her jaw, enlarged. “Initially, I wasn’t very comfortable about being seen in public. I stopped taking photographs, because I could not bear to see the ‘changed’ me,” she says.
She was diagnosed with acromegaly – after years of consulting the wrong specialists. “I was having problems with my occlusion (contact between the upper and lower teeth) – I couldn’t bite properly. I saw a few dental specialists and even an orthodontist. I said to them: ‘I think something is wrong with my jaw’, but none of them knew what was happening to me. I was referred to many different dentists; some never even called me back,” says the 45-year-old.
“I also started to get terrible headaches. I was given painkillers but I knew that I couldn’t keep taking them.” As a last resort, Alexia consulted a maxillofacial surgeon, who treats anatomical areas associated with the mouth, jaw, face and skull.
“He took one look at me and immediately asked that I go for an MRI scan. The results came back and it showed that I had a growth in my pituitary gland. He suspected that it was due to acromegaly.”
A term, which Alexia knew nothing about.
She was hastily referred to an endocrinologist for further blood tests and sure enough, the results revealed an excess of growth hormones in her system. “Only then did I realise that there had been signs everywhere: I felt tired all the time, my tongue had grown bigger, the rings wouldn’t fit my fingers, and my shoe size had definitely increased.”
Alexia also has high blood pressure and diabetes, which was initially brushed off as a part of her family’s medical history. After the diagnosis, she was prescribed with a drug called Cabergoline, which did little to change her condition.
I was very upset – I cried a lot then.”
Then Alexia was given injections of somatostatin analogues, which took six months to complete. “When I got my first injection, I didn’t know that there would be side effects. I started to get terrible stomach aches and it went on for a week,” she says. The side effects disappeared over time.
“I was in and out of the hospital every month, and each time I had to stay on for four to five hours. I thought that I would get better after the treatment, but two months later, the doctor called me back.”
Her growth hormones, it seems, had started peaking again.
She was then asked to give Cabergoline another try. This time, the drug worked. “Now everything is under control. I only have to go for a blood test once in every six months.”
The physical changes though, have so far been irreversible. “I used to wear size five shoes; now they all have to be size eight. My skin is coarse and my voice sounds different. I also have difficulties eating – I can only chew on my left side,” reveals Alexia, who is currently filling her time as a food and beverage manager at her brother’s resort.
“But I’m still the same person,” she says. “I have to take what God has given me – it’s my destiny. I just hope and pray every day that it will go off permanently. Now if anyone asks about my appearance, I will tell them about acromegaly.”
If you’re meeting Alexia for the first time, nothing about her will strike you as out of the ordinary. It is only after she shows you a picture of her old self, that you might be inclined to think she’s someone else altogether.
As compared to the attractive woman staring back from the photo, Alexia's nose is wider; her jaw, enlarged. “Initially, I wasn’t very comfortable about being seen in public. I stopped taking photographs, because I could not bear to see the ‘changed’ me,” she says.
She was diagnosed with acromegaly – after years of consulting the wrong specialists. “I was having problems with my occlusion (contact between the upper and lower teeth) – I couldn’t bite properly. I saw a few dental specialists and even an orthodontist. I said to them: ‘I think something is wrong with my jaw’, but none of them knew what was happening to me. I was referred to many different dentists; some never even called me back,” says the 45-year-old.
“I also started to get terrible headaches. I was given painkillers but I knew that I couldn’t keep taking them.” As a last resort, Alexia consulted a maxillofacial surgeon, who treats anatomical areas associated with the mouth, jaw, face and skull.
“He took one look at me and immediately asked that I go for an MRI scan. The results came back and it showed that I had a growth in my pituitary gland. He suspected that it was due to acromegaly.”
A term, which Alexia knew nothing about.
She was hastily referred to an endocrinologist for further blood tests and sure enough, the results revealed an excess of growth hormones in her system. “Only then did I realise that there had been signs everywhere: I felt tired all the time, my tongue had grown bigger, the rings wouldn’t fit my fingers, and my shoe size had definitely increased.”
Alexia also has high blood pressure and diabetes, which was initially brushed off as a part of her family’s medical history. After the diagnosis, she was prescribed with a drug called Cabergoline, which did little to change her condition.
I was very upset – I cried a lot then.”
Then Alexia was given injections of somatostatin analogues, which took six months to complete. “When I got my first injection, I didn’t know that there would be side effects. I started to get terrible stomach aches and it went on for a week,” she says. The side effects disappeared over time.
“I was in and out of the hospital every month, and each time I had to stay on for four to five hours. I thought that I would get better after the treatment, but two months later, the doctor called me back.”
Her growth hormones, it seems, had started peaking again.
She was then asked to give Cabergoline another try. This time, the drug worked. “Now everything is under control. I only have to go for a blood test once in every six months.”
The physical changes though, have so far been irreversible. “I used to wear size five shoes; now they all have to be size eight. My skin is coarse and my voice sounds different. I also have difficulties eating – I can only chew on my left side,” reveals Alexia, who is currently filling her time as a food and beverage manager at her brother’s resort.
“But I’m still the same person,” she says. “I have to take what God has given me – it’s my destiny. I just hope and pray every day that it will go off permanently. Now if anyone asks about my appearance, I will tell them about acromegaly.”
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