“Bachelor in Paradise” star Megan Marx has revealed her shock at being diagnosed with a rare and debilitating condition.
The celebrity took to social media to share with her followers that she has spinocerebellar ataxia (SCA6), a rare inherited neurological condition that progressively affects movement.
Marx, who first became famous on Ritchie Strahan’s season of “The Bachelor” in 2016, reassured her fans that despite the devastating news she is remaining optimistic.
“Months of waiting for gene test results, I met with the neurologist on Friday,” Marx said.
“S*** news. Diagnosis. Some tears while Keith took over the conversation.
“F*** huh! Feeling grateful for my physical body right now, in its present state, before neurological degeneration attempts to take some of me from me.
“All the yays for lovemaking and skinny dipping and hiking and painting and food-ing and bad dancing and awful conversations at bars.
“Actually feeling grateful altogether. Many have worse diagnoses. Just some processing to do. Lots of living to do.”
Marx said that she delayed testing for the condition after watching a close family member struggle with it.
“I kept putting off testing too – not sure if it’s that beneficial knowing since it can’t be treated … My Pop suffered pretty bad with it (couldn’t swallow properly, walk or talk properly), so hard staring down the lens of that.”
When a commenter asked her about support, she said: “I’ve joined a facey support group which has been great. I’m more struggling with the fact that there isn’t a whole lot of research on the condition!”
She didn’t take kindly to one suggestion that she should stop smoking.
“Ha ha you’re an asshole. Fyi everyone I am a non-smoker!”
Spinocerebellar ataxia (SCA6) is a neurological condition caused by a genetic change in the CACNA1A gene. This condition is inherited in an autosomal dominant pattern, and it affects 1 in 100,000 people.
It is characterized by progressive problems with movement, and initial symptoms include problems with balance and coordination. Over time symptoms can progress to tremors, uncontrolled muscle tension, and loss of coordination in the arms.
The symptoms usually begin at the age of 40-50, and most people need wheelchair assistance by the time they are in their 60s.