Acromegaly Awareness Day
1st of November is Acromegaly Awareness Day and encouraged by our wonderful Acromegaly Community leader Jill Sisco, I decided to write a post on being a patient with acromegaly.
For years, I have experienced horrendous headaches and sinus infections, extreme fatigue and loss of sight. I was a busy mother, auntie, wife and daughter with a big house, a big garden and a full time job that also involved travel. My GP dismissed all my complaints, and all he ever prescribed was a holiday. At one point, I visited a friend whose mother was a neurologist. She looked at me and said I should get an X Ray of the sella turcica. I paid no attention – doctors only see diseases in people, and at that point I was feeling just fine. And then, a couple of years later, when the headaches became more frequent and the ENT saw me every month and prescribed yet another antibiotic, a cousin of my husband, a doctor living abroad who had never met me, came for lunch. 5 minutes after he left our house, he rang my sister-in-law in another city, recommending that I get tested for acromegaly. At this point, I was desperate for a diagnosis and a cure. When the GP yet again laughed in my face, I went to see a neurologist. She sent me for a CT scan (MRI was not available at the time), and the radiologist, whose son was a friend of my kids, looked really worried when she told me there was something there, in the sphenoid sinus, but more investigations would be needed. All I could think of was a malignant tumour. I knew it was there, and it was good to get a confirmation.
At this point, I was living in Romania and teaching in a private university. I had just received a postdoctoral research grant from ERCIM and I was going to join Fraunhofer IESE in Kaiserslautern, Germany on September 1st 2003. Working in research was a dream I had all my life. Nobody had any idea of a diagnosis in Romania, and much less of a treatment, so I decided to go to Germany anyhow. I would pursue the fellowship and then come home to die.
All seemed great in Germany until I got a really bad sinus infection, an eye looked like it was going to pop out of my head, and I went to the ER in the local hospital. I was sent to a university hospital nearby, where my sinus infection was treated with one antibiotic after another. I got an MRI and a biopsy of the mass in the sphenoid sinus, and the diagnosis was acromegaly. The neurosurgeon was in a hurry to excise it, but the brilliant endocrinologist in charge of my case prescribed a 3-month treatment that managed to shrink my adenoma to half of its initial size, making surgery possible. The doctors who treated me reckoned that the adenoma had grown there for 10-15 years prior to surgery. A pituitary adenoma is not a brain tumour, and it is usually benign. But it can wrap itself around arteries and the optical nerve, which makes surgery dangerous and difficult. My adenoma was 2.5 cm in diameter – which is considered a macro-adenoma. It had grown through the bone into my sphenoid sinus and it had filled it – hence my horrible headaches.
I had surgery at the Grosshadern Clinic in Munich on the 9th of March 2004. For a while, my blood tests approached normal values. But then the symptoms reoccured, although there was no new adenoma. I moved to Ireland in 2005 and it took 4 years to find a consultant who understood what was going on. He told me that I was in denial, and I had never been cured, and I needed medication to control my acromegaly. I am on a drug called Sandostatin LAR monthly since May 2009, and luckily I can lead a normal life.
The most important thing in relation to rare diseases is early diagnosis. TV series such as House, Grey’s Anatomy and ER have done a great job at increasing awareness about rare diseases. Grey’s Anatomy even had an episode with an acromegalic patient.
I am forever grateful to the Acromegaly Community leader, Jill Sisco, who works tirelessly with specialists and Pharma companies to increase communication and to make sure the patients’ voices are heard. Due to her, we get invited to conferences and seminars where the latest developments in diagnosis and treatment are discussed.
I am one of the lucky ones – medication works for me, and there was no reoccurrence of the adenoma. Having the support of an international community of patients and families makes a huge difference. I have a brilliant consultant endocrinologist looking after me, I was invited to take part in several studies and Ireland has an acromegaly patient register. For a couple of years, I have curated a resource titled Acromegaly News on Scoop.it. Nowadays I collect resources on diigo.
I want to leave you with an excellent explanatory video made by a fellow patient based in the UK, Dan Jeffrey. Dan published a memoir on his experience of living not with one, but with two rare conditions.
And if you are interested in the experience of other patients with acromegaly, there’s another 2011 anthology I can recommend: Alone in My Universe.
November 01 2021 08:13 pm | Limerick