Hello All,  I want to help others like me. I know you probs can't be bothered reading all this but its so important to me personally.  A Cavernoma is a rare condition in the UK I'm talking 1 in 600 folk. It's a benign tumour found on the brain or spine, basically a small mass of abnormal blood vessels, so that's why theres raspberries all over my page lol cause it looks like one 😋

Aim

To educate people in Cavernoma.  Also to raise funds for the Charity that cares and gives Families support, therapy and counselling. 

The Team

Set up by Simona (who has first hand experience) and a great therapist Ellie and a few other volunteers, trustees and Mr Teo a Specialist Neurosurgeon based in Bristol together they are cool people who provide holistic, therapeutic, medical, brain surgery, legal, benefit entitlement and emotional support to those affected by the condition.

Symptoms 

People with the condition suffer migraines, speech loss, vision loss, memory loss, they experience seizures and or epilepsy, their balance can be impaired, they may not be able to walk at all, vertigo, body jerks, jaw chatters, nightmares, anxiety.  They can cause a brain bleed and they can cause strokes either way leaving behind damage from the iron in the blood.  Once you've had a bleed you're more susceptible to another. Its something you can be born with, grow with and can be genetic. You can have single or multiple Cavs too.

Your support enables 

This money will help the Cav Society run yoga and meditation neuro rehabilitation retreats, fun days out, support groups, group therapy workshops,  private medical referrals, Networking Family Quiz's, Kids Crafting. 1:1 counselling, after surgery support, benefits support advice, nutritional advice, and a support line and starting this 2021 research into Brain bleeds and in Dec 2020 The Cavernoma Society joined ranks with The Angioma Alliance to give better care, info and research amazing news!

Medication 

These support networks are important many hospitals and GPs have very limited knowledge on this especially in the UK, we are quite far behind in comparison with USA. The Cav Society team can put patients in touch with those neurosurgeons, seizure, headache specialists, Gamma Knife Radiotherapists  who maybe out their area.  They can explain medications you shouldn't take that can put them at risk too like Ibuprofen or any blood thinners. 🤢

Counselling 

Importantly they also help Family members, those whom maybe bereaved,  those Partners and the Kids too to receive Counselling and the counselling is weekly and done by Volunteers 24 people affected by Cav have received Weekly Counselling sessions this year.👍

Because the condition is rare you find that it really does have it's own small, friendly community, everyone's willing to help and share their MRI scans,  knowledge, information and experiences, recovery, surgery rehabilitation, Gamma Knife Radiotherapy and  stuff it's really comforting when you first walk into the community actually.  

Education 

Simona runs education seminars in medical practices and is invited to speak at national medical events.  The Lass in my eyes is beauty shes a clear, high functioning, hardworking, inspiration and after all shes been through with her stroke and goes through, I just love.  Shes so upbeat and shes become a great Friend to me.

Stay focused 

If you know you are not right, dont let Doctors fob you off or carry on pumping yourself full of drugs that dont work for your symptoms.  Continue to ask for help.

Symptoms and diagnosis 

I've now met people who seizure, those whose faces have dropped, who have poor memory, struggle to speak, have fits, have lost their jobs and have no form of income and have lost family members and have had brain bleeds / strokes.

You can be miss diagnosed. Doctors can get things wrong, not take you seriously and be rude at times they're only Human. I had to stop playing rugby due to stabbing pains, tiredness and migraine. A lot being misdiagnosed as anxiety including Seizures, migraine, dysphonia (speech loss).  I pushed for a Migraine specialist and i had to push.  My brain bleed was missed and was any time upto 4 years ago, I have been going to the Docs for this length of time asking for help.

I've always taken vitamins, drunk protein shakes, lots of water, eaten well and tried battle on with sport although tired.  I knew I wasn't right and when I finally got an MRI we got the right diagnosis and found damage by a bleed on the brain its taken a good, professional and methodical Doctor to finally believe in me and take it seriously.  Shes been a star, as she took the time to read symptoms  ⭐ 

Shes also embraced learning about a medical condition she has never dealt with before and has educated herself and we have dealt with it together.

Hidden illnesses are not easy!! You know your body best. 

😊👍 

These Guys are amazing with me and mine and i owe it to others to receive the same care.  They are also fighting for a cure, so i'm fighting for them and asking for your help in order to raise the vital funds they need. Please consider donating because every little helps. Thank you for your support loads of love H😘👍