Exactly!
I was the same as what you’re thinking now but 5 years ago Cavernoma became my new life, I found out the hard way.
I considered my life as what you would call normal, married, kids, job etc, unaware of what was in my brain and that the Cavernoma was about to wreak havoc with my lifestyle.
2 weeks prior to the 6th of December 2013, I believe that I had a pre warning as I drank a cup of tea, that spilt down the left side of my mouth as my lips we unable to grip the side of the cup. I laughed of the incident and continued on with my normal daily routine.
4 days before the Cavernoma was to make itself known I had stiffness in my neck which worsened each day along with slight clumsyness, confusion. I just had the feeling of not being right.
On the day, that I later found out I’d had a brain hemorrhage, l experienced the most terrifying, unbearable pain in the back of my head. Believe me when I say the pain was worse than giving birth, even now I’d rather go through established labour 10 times over, than experience the pain that was coming from my head.
I’d said goodbye to the life that I recognised as mine and continued on with stroke symptoms, pain, balance, speech, disorientation.. the list goes on.
After months of tests and misdiagnosis it was finally agreed that I had a brain Malformation called a Cavernoma which had bled causing a hemorrhagic stroke.
2 years ago a second Cavernoma was found as I had the onset of seizures, now a daily occurrence which meant that I had to submit my driving licence and start a lifetime of epilepsy medication.
My treatment is a watch and wait approach as surgery is risky due to the location of the first Cavernoma. But while I’m waiting, who is watching?
I take 18 tablets a day which are mostly for controlling my pain, some of my symptoms have got better over time, some have got worse and some are new.
Even though these words discribe my Cavernoma experience, I’m not looking for sorrow and pity, what I wish to do is to spread, share and support as many people as possible to help change the quality of life.
You don’t need to be a patient or know someone with a Cavernoma to visit this site, the fact that you have clicked means that my mission is working and that awareness is being shared.
Cavernoma is classed as a rare condition meaning that there is little information out there which unfortunately can leave patients feeling alone, uninformed and scared as to what the future will hold for them.
They are other international Cavernoma organisations such as Angioma Alliance in the USA, who were the first to set up a charity and our closest neighbours Cavernoma Alliance UK who are based in England. CAUK have been established for 13 years.
The Alliance’s work very hard to raise funds for ongoing reaserch, which will bring us closer to finding a cure, offering a strong network to create a community that can receive help and support from others that can relate to the same experience.
Much love
Kristen xx
Founder of CAVS and a your friend xx
Brains Get Sick Too 