Experiencing symptoms of fatigue, tiredness, and anxiety, I couldn’t ignore the significance of my condition, especially considering my family history.
I still remember asking the young girl doing the ultrasound “So what is that?” expecting her to say something like “Oh that’s your …”. But her more serious and cautious response was along the lines of “You will need to speak to your doctor…”
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.
