My journey started when I was in my early teens. At 14 my sister and myself were sent for genetic testing to see if we carried the MEN1 gene as my mother was told there was a 50/50 chance that this could have been passed onto us. Both my sister and I both inherited MEN1.
We were given regular routine scans, blood tests and check-ups over the next few years. During one of the scans, a lump was found on my pancreas. During another routine scan it was found that the lump had increased in size. Prof Burgess referred me to a surgeon as he wanted the lump removed.
For me to get the lump removed I had to lose a certain amount of weight due to me being a big girl back before the surgery. It was a hard year for me with losing the weight, but I had the support of my friends and family around me to push through it. After a long year we finally got the results that we need to get the lump removed.
On March 15th 2022 I had gotten the surgery that weu2019ve all been excited/nervous about, it took up to 8 hours for them to take it out and it took a few weeks before I could leave the hospital. I did go back in 2 more timeu2019s after being released, one to infection and the other due to not eating probably and having nausea, itu2019s been 7 months now and Iu2019m still slowly recovering from it.
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Jaimie-Lee Bailey Gordon u2013 Sister
My sister was diagnosed at the same time as me, she didnu2019t have much issue with MEN1 until she fell pregnant with my nephew. While pregnant she had high calcium levels and all through the pregnancy, she would have morning/afternoon sickness and she also struggled to lose weight due from the high calcium.
4 years throughout she has had scans and blood test to keep track of her levels, she is going to be having surgery to remove 3 and a half thyroids removed and got to have one placed in her arm just in case her calcium levels drop and needs to be replaced.
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Andrea Bailey u2013 mother
In 2004 it was confirmed via testing that my mum had inherited MEN1. After having me in 1998 and my sister in 1999 she was tired all the time and had lost a lot of weight and was unable to put on any weight back on.
She attended our family doctor and sent referred her to an Endocrinologist due to her motheru2019s history of MEN1.
She was diagnosed with MEN1 and overactive parathyroid. She had surgery in 2006 to remove three quarters of the parathyroid.
In 2016 she was getting tired again, and after some routine blood tests it was found that her calcium levels were high. After further scans it was found that her parathyroid was enlarged again. Her calcium was monitored regularly in Feb 2021 she had surgery to remove the remaining parathyroid, and a graft of the parathyroid was placed on the muscle in her forearm.
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Kaye Bailey u2013 Grandmother
At the age of 42 my grandmother got diagnosed with MEN1 after not feeling well for a long while. After she found she gotten the treatment she needed. At some point she had to have her parathyroid removed due to high calcium, she recovered well after that. She is 71 years old now and hasnu2019t had any more issues with MEN1.
