Spotlight on members of our community living with neuromuscular conditions: Simon Hogan
As part of our members’ stories series, Simon Hogan kindly shares his story of the journey to a diagnosis of macrophagic myositis (MMF).
I am Simon Hogan, from Waterford. I was a firefighter and had to give it up due to my diagnosis. In the spring of 2009, I was required to get the hepatitis vaccine for work. I started getting ill a couple of months after the vaccine started, getting sinus problems I never had before. In December of 2009, I started getting chest pains, indigestion, and heart tests were carried out, but I got no answers.
In 2010, I started getting a sore throat, sickness, pains in my body, legs, and arms, and I was still not getting any answers. I started getting tests for different things, but nothing showed up. I started getting pins and needles and bladder problems. I attended a conference in Meath, and there was a neurologist there. I then got an MRI test as I was having blank spots and forgetfulness. They tried treating it with steroids.
In 2013, I got a biopsy done in Cork and I got a diagnosis of macrophagic myositis (MMF). It is extremely rare. I went to visit my son in Australia in 2014, and he has a friend who is a neurologist, and they said they would look into my diagnosis. They have only heard of one case in Australia. It has become more common in France in the last 20 or 30 years. Two years ago, I was the only person with it as far as my neurologist was aware in Ireland, and she had only heard of one previous case in Ireland.
I now walk with a stick, and I get stiffness and pains in my legs, and pins and needles. I go swimming a few times a week. Sometimes my voice will just go, and I can get a choking feeling like a golf ball in my throat. I have poor concentration. I cannot do tasks around the house, and if I do, I may pay the price, and I am very sore.
At times, I feel on my own with no one to relate to. My family is a great support and very good, but it is hard on them, and I know that. I want to help other people and let them know they are not alone.
