We are excited to introduce Carrie – an adult with HH and the Director of our Hope for HH UK Affiliate!
Four years ago was pretty much the worse experience of my life. I was hoping to have a temporal lobectomy to stop my daily seizures, after believing for 30 years that my seizures were coming from my temporal lobe. I had declined the surgery for many years, but it finally got to a point I wanted the seizures to stop so my girls no longer had to witness them and I could progress my career further!
I would not wish anyone to go through an unnecessary brain surgery – to then find out the diagnosis was incorrect, and in fact, all along the cause of my daily seizures is due to a hypothalamic hamartoma. The worse thing about this is my seizures did not stop and in fact got worse on top of extra complications. Since the diagnoses, the medical professionals I was under couldn’t help as the condition is so rare they didn’t know how too!!
I then turned to the individuals at Hope for Hypothalamic Hamartomas, in the USA, who showed me compassion, love and gave me hope!! If I could turn back time obviously I would, however, the experience has taught me so much – to never give up on anything that means so much to you, even when things seem impossible! It’s only impossible if you make it. It has taught me to love unconditionally and never take anything or anyone for granted – as we all take so much for granted. It has made me realise all the important things in life and also who the special people are that really care.
Without Hope for HH, friends, family and recent work colleagues I couldn’t have gotten this far. Working with Hope for HH inspired me to set up the Hope for HH UK affiliate. It has given me a sense of purpose. There is no better feeling than helping other families who are going through the trauma of a HH diagnosis or dealing with the symptoms when suffering with HH. Since having such amazing support, I have met many other strong families and made friendships which will last a lifetime. Don’t get me wrong – you will always come across quite the opposite when living with this condition. There are those who don’t understand or don’t want to try to understand, but again it’s a lesson in life which you learn to rise above and love those who love you!
Living with HH is really not easy, especially when you look so fine on the outside but inside your head feels like it’s a bit foggy, it’s scary everyday to wonder what time your seizures will happen, how long they will last, who will be around when they happen, will my girls have to witness them??? When I was younger, going to school with HH was difficult as it felt like you are looked at like you’re that odd child who is naughty all the time. Even today, I feel so guilty still having such long seizures in front of my girls despite this being a result of incorrect surgery. I am embarrassed when I forget something, and humiliated when I have to ask a question more than once! It is hard not to feel guilty that you are so tired all the time, and constantly worried about people’s reactions!!! It certainly puts your pride to the test when you were always once so independent but then find yourself having to rely on friends, work colleagues and family. But that’s when you realise there are good, willing people who care about you and want nothing more than for you to be better. These past few months especially made me realise this as I once thought people didn’t care.
In some ways, all this makes you determined to do well and to achieve your goals like studying for your dream job, being a mum, or buying a nice home. All these things I am lucky enough to say I have achieved but it wasn’t easy and even harder since the unnecessary surgery!
Bottom line is……this time four years ago, I saw life completely different to how I see life now and have learned to not take life or health for granted. Most importantly to thank those who are there for you unconditionally! With thanks to Hope for HH, friends and family I know I will get through the dark days and know I will find the right treatment for me.
It’s hard to adjust to the new me and I grieve for the person I once was before the surgery as life certainly changed that day. But it proves that no matter how hard life still is even after four years – with the right people behind you, you find a way to get through.
Having this condition has taught me to be strong, never give up on your dreams, help others and to try to stay positive!
Hope for HH made me realise this.