Soniya Vadher-Patel is a South Asian, UK-based social media influencer, entrepreneur and mental health advocate. She is also a wife and a mother of two. Soniya was born with an ultra-rare medical condition called Familial Chylomicronaemia Syndrome (FCS). FCS affects 1 to 2 in a million and is incurable. Those with FCS have difficulty metabolizing or absorbing fat due to a shortage in the enzyme lipoprotein lipase.
Soniya is an inspiration to many. Her audience is growing rapidly as she uses her social media platform to educate and help others, through her experiences, to accept and cope with invisible diseases. She makes it very clear that she refuses to let life’s obstacles rob her of her happiness. Soniya is a fierce and highly motivational individual whose aim is to help people face challenges in their own lives. She does this by being open and raw to let others see how she turned her pain into her passion.
“I was around 5 years old when I was diagnosed with an ultra-rare disease called Familial Chylomicronaemia Syndrome (FCS). Because of this ultra-rare condition, I’ve had to be on extremely low fat diet all my life. I am only able to eat up to 10g of fat per day (this is equivalent to 1/3 of an avocado or 3 and a half walnuts). My consultant told me that I can have up 20g of fat but whenever I’ve gone over 10g, I’ve ended up getting pancreatitis.
One of the biggest complications I’ve lived with all my life is pancreatitis due to high lipids caused by FCS. I have genuinely lost count of the amount of times I’ve suffered from pancreatitis, both in and out of hospital (definitely well over a hundred). Pancreatitis can be life threatening and causes long term damage to the pancreas and further health issues such as diabetes.
I was told having children might not be an option for me as it’s too much of a risk and there was very little information on FCS and pregnancy. I always thought I’d never have children but I am now 34 years old and I have not 1 but 2 miracle babies. Bringing them into this world was by far the hardest challenges I’ve ever faced. I had treatment called Plasma Exchange 3-4 times a week (then daily, nearer to the end) during both pregnancies. After the 1st trimester I had to be back on my regular medication to avoid pancreatitis during pregnancy. I didn’t know whether this was safe or not but the scary thing was…nor did my consultant and doctors.
Not all women with FCS have had successful pregnancies so I am forever grateful for all the help and support I had during this time.
FCS is an invisible illness and just because I don’t look ill, I feel that it’s never been taken seriously by anyone, including school teachers, past employers, friends and family, which is why I am using my social media platforms to raise awareness, advocate, educate and help others (through my experiences) to accept and cope with rare diseases and other invisible illnesses”.
Living with an ultra-rare, invisible illness & coping with the challenges that come with it.
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Crafted by Hameem Kay
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