This Man is Speaking Out About What it’s Really Like to Live With ALD

Michael Conway, 51, was diagnosed with Adrenoleukodystrophy (ALD) two years ago. Since then, he has been raising awareness for the rare and potentially life-shortening condition. He wants to let people know what it’s like to live with ALD.
Michael was diagnosed in 2016, but his symptoms began in 2009. He first noticed something was wrong when he felt a tingling sensation in his right arm and leg, and his feet were dragging. At first, he was concerned that it was motor neurone disease, which his father had suffered from, and doctors were unsure what was causing the symptoms. Eventually Michael was referred to a consultant neurologist for further testing. He was given eighteen kinds of test, including blood tests, MRI scans, and lumbar punctures, before he was given a diagnosis of multiple sclerosis on Christmas Eve 2015. The symptoms of multiple sclerosis and ALD are often similar, but Michael and his doctor were not confident in the diagnosis and decided to continue testing. Then, in May 2016, Michael was finally diagnosed with ALD. He says,

“I was relieved to finally have an answer but also upset when I found out that there was no cure or medication yet.”

ALD is a progressive inherited disease that affects approximately one in every 25,000 people in the UK. It is caused by a genetic mutation that stops the body from processing very long chain fatty acids. These then accumulate, which can destroy the protective sheaths covering neurons in the body and brain leading to nerve damage. People with ALD usually experience physical and cognitive symptoms, such as reduced muscle control, seizures, and memory issues. However, these differ between childhood onset and adult onset ALD. Childhood ALD tends to be even more severe than adult onset ALD. It occurs between ages 3-10, progressing very rapidly and in some cases leading to death. You can read more about ALD here.

Michael is affected by adult onset ALD that causes him to have bad balance and frequent falls. He also suffers from chronic fatigue and memory problems that make him worry about forgetting car keys or money when he goes out, and the condition can make daily tasks stressful. However, he says that he is still able to live a fairly normal life, and that having ALD has made him approach life in a calmer way.

Michael describes how living with the disease has shifted his perspective, and how now he sees everything as more important and valuable. He says that he has a lot to be thankful for and that “the simple things in life are cherished very much and I am blessed to realise this.” Michael says that, to him,

“Every day feels like Christmas.”

Organisations for people with ALD have been a huge help to Michael, including ALD Life, CLIMB, and Raremark, as has the company he works for in Glasgow, BAE Systems, which builds naval ships. Despite his condition he continues to work, saying,“Some people in my situation would give up and not bother going to work. But I go in every day as I think it’s important to keep going.”

Friends and family have also been very supportive, says Michael, and have been interested in learning about ALD. After sharing his story in the news, including the national newspaper the Daily Record,  he has received lots of messages encouraging his work raising awareness for the disease and congratulating him on his new granddaughter. His friend Allen wrote ‘you’re one in a million Michael, not one in twenty thousand’, and others called him an inspiration and wished him luck. Michael also has a wife, Carol Ann, who he describes as his “everyday soul mate.” She has gone through several years of treatment for breast cancer and Michael says that they support each other through their illnesses.

Michael says that family is very important to him, and that the thought of seeing his first grandchild, two month old Olivia, grow up is a “brilliant thought […] that will keep me going.” He and Carol Ann have two children, Rachael (26) and Matthew (22). Matthew is Olivia’s father, and Michael says he is relieved that Olivia will not inherit his disease because fathers tend not to carry it. There is a risk that if Rachael is a carrier her sons will be affected, but she hasn’t been tested and isn’t planning on having children soon. Michael has been to a genetic consultant to learn how the rest of his family could be affected by the disease, and was advised to contact his cousins to let them know that they may be carriers. They are now planning on having genetic testing to find out.

ALD is a rare disorder that a lot of people don’t know about. Michael has worked hard to raise awareness of it, and share his story. He says, “It’s helpful to read the stories of other people with ALD because they are the only ones who understand you. It’s therapeutic to share and talk about your experiences.”

Anna Hewitt

Anna Hewitt

Anna is from England and recently finished her undergraduate degree. She has an interest in medicine and enjoys writing. In her spare time she likes to cook, hike, and hang out with cats.

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