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In 2017 I got sick and it took a really long time to find out exactly what was wrong. I was having problems with high calcium levels making me tired, feeling sick, having abdominal pain, needing to wee all the time, poor concentration and tiredness like I have never known. 

It was discovered that I had a fibroid but I also had a parathyroid tumour that needed surgery. In the end I had parathyroid surgery, a hysterectomy and radioactive iodine all within about 6 months and I hoped it would be a permanent fix.

When my blood results were still abnormal  a scan discovered another parathyroid tumour that led to investigation for some rare genetic causes. The results came back that I have multiple endocrine neoplasia type1. Men1 for short. I received my diagnosis in a three line letter the week before Christmas in 2018.  I sat on the results for a bit and when I finally googled the condition the information I found iwas devastating, average age of death was 50, I was 47.

I must have spent the first six months trying to find out everything I could about the condition as the information was severely lacking from my consultant.,I’m now seen by a team at Oxford. I spent a lot of time crying because this diagnosis is very tricky, not only does it affect you but you have a 50% chance of passing it to your children. I had to wait a really long time for genetics appointments for myself and then the children.

Men 1 is a defect on gene 11, where I am deficient in menin a tumour suppressor. My particular defect has never been detected before and the genetics report gave me a diagnosis of unknown significance . I underwent rNA studies but Covid really slowed this down as the labs capacity was swamped by the demands of Covid. When they finally understood the defect they tested my boys, so nearly 2 years after my diagnosis the kids found out they didn’t have my faulty gene. My gene also did not come from my parents, my defect was donovo, a spontaneous occurrence .

Since my diagnosis I have had a further parathyroid and thymus surgery and I have a tumour on my adrenal gland, tumours on my pancreas and multiple growths on my liver.I have a MRI and about 10 bottles of blood taken a year. For the first time since 2017 I feel well almost every day and I feel thankful for how far I have come.

Amend have been amazing with information packs, films, counselling, patient information days and zoom support meetings and I feel like I might have gone a little bit insane without them. This trip and fundraising effort will hopefully help them to support someone else who’s newly diagnosed and drowning with the impact of this disease like I was not that long ago.