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Aussie mum loses kidney to little known disease: 'I was told I was crazy'
Even though mother of two Chris Shaw suffered with severe symptoms including migraines, nausea, vertigo, and sky-high blood pressure, all through her 20s and 30s she was told it was all in her head.
Eventually Chris, from Geelong, was diagnosed with a condition called Fibromuscular Dysplasia (FMD). Sadly, the diagnosis came too late to save her damaged kidney.
What is FMD?
FMD is a vascular disease, once thought rare but now thought to affect one in 20 women.
It can cause heart attacks, strokes and aneurysms.
Many women with FMD experience few symptoms or medical issues, yet severe forms can be fatal.
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Despite Chris' severe symptoms, her FMD went undiagnosed and untreated for a long time. Now 51, she is sharing her experience, opening up about how her symptoms damaged her kidney so badly, it could not be saved.
“If I had been treated for FMD at the start of my illness, there is every chance I would still have my kidney and a whole host of other medical conditions could have been avoided," Chris says, revealing that despite having endless scans and seeing several experts, it was never picked up.
“Despite blood pressure readings as high as 250/150, I was even told to stop looking for answers, and that it was a mental health issue, that I was crazy," she continues.
“I knew something was wrong and did not stop, and eventually I was seen by a specialist who finally worked out what was happening.
“Having a diagnosis was a massive relief - I finally had an answer.”
Chris found support in doctors who listened
Throughout her journey of diagnosis, treatment and recovery, Chris found support from doctors who listened, and from other women living with FMD.
"When I was moving interstate, my GP said ‘don’t give up looking for answers, you will need to advocate for yourself and find a new doctor to keep looking’. Because of her, I became a strong advocate for myself," she tells Yahoo Lifestyle.
“My FMD family, who I have met online, and in person, from Australia and overseas have been a wonderful encouragement, support and friendship.
“My family has been my source of strength and peace and I could not have done this without them. They have been my support throughout this long journey, in the search for a diagnosis and in years of treatments since then.”
The lasting impact of late diagnosis
For Chris, her diagnosis wasn’t a cure, but it was a relief to know what was causing her symptoms.
“I have had many treatments since then, and had multiple arteries affected, throughout my body, some being treated, others left because it’s too risky to intervene," she says.
“My health has been stable for the last couple of years, which is wonderful. I do my best to keep fit and healthy and keep my blood pressure under control, so I can minimise my risks. There are health issues I face daily, but they do not stop me from living a great life with my family and friends.
“Knowing that doctors around the world are working together to find the genes, and treatment for FMD has given me so much hope.”
New research brings hope for women with FMD
New research taking place at the Victor Chang Cardiac Research Institute has identified key genes driving FMD.
Chris is hopeful that, having identified the genes, diagnosis and treatment opportunities will improve.
“Now that we finally know the scale of this disease and have identified the key genes driving it, we are hopefully one step closer to being able to find a cure and ensure more women are diagnosed early so they can be properly treated," she says.
“I also want to ensure that other women out there don’t have to endure what happened to me."
And as for her message to others, she stresses: “Be your own advocate, even when it’s hard. Don’t give up. A diagnosis doesn’t mean the end of your life, a diagnosis can bring answers and hope and a new beginning.”
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