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.
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.
Although educating healthcare professionals and the general public about the disease is too late for me. I advocate for this to happen so that no future patient has to go through what has happened to me.
What I have learned is appropriate referral is so important. For me a partial diagnosis came 3 years after my 1st hypertensive crisis. Full diagnosis and treatment took another 4 years.
Through attending NET meetings at FSH I was made more aware of NETS and found friendship and understanding from all who attended plus I had found a ‘home’ where others understood.
After almost 5 years of misdiagnoses, Kristen was diagnosed with NETs at only 43 years of age. Kristen’s initial diagnosis was grim, thankfully a second opinion and access to PRRT treatment successfully reduced her tumour and gave Kristen a second chance at life.
