Cavernoma Kids

15/09/2023

Today is ! Also known as and to celebrate I wanted to share with you these hilarious bloopers from 2 years ago when I tried to make an informative video for the wonderful Cavernoma Society who have helped many people like myself live with the condition, while Supporting and Educating those who have a loved one with the condition or are medical professionals.

Check out the bloopers 👇
https://youtu.be/toUWo9L_wl0?si=JmVL2FzZXs-7wOY9

To watch the informative video about Cavernomas that I eventually managed to get together without any mistakes (except for that last slide that gives you the wrong date for RaspberryDay 🤦‍♀️) check out the this video 👇
https://youtu.be/toUWo9L_wl0?si=JmVL2FzZXs-7wOY9

There is a reason I haven't made anymore since 😅

1 in 600 people have a cavernoma? But what is it? Also known as cerebral cavernous malformation (CCM), cavernous haemangioma; or cavernous angioma. They are ...

16/01/2023

is here!

It's time for you to check in with someone for your own .

Grab your favourite drink and sit down with someone who makes you feel good and have a chat, catch-up, get some things off your chest or find out what your person has been up to?

January is hard with or without Cavernomas. You never know, the chat may be as beneficial to your friend/family member as much as it is for you?

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15/01/2023

8 reasons to get out into the snow this 🎿

1️⃣ Cold temperature helps reduce swelling and inflamation in the body, so it's good for your Cavernoma and overall bodily health. 👍

2️⃣ Building Snowmen and shaping snowballs builds dexterity (coordination of the hands and muscles) which is great physio therapy after a bleed, stroke, or surgery.

3️⃣ Snow activities with family and friends boosts morale and has shown to help positively effect your mental health.

4️⃣ Snow is a natural sound buffer making even some of the busiest days outdoors quieter as the sound does not bounce off snow. Great if you frequently get over-stimulated by sound. 🔇

5️⃣ Icy temperature ❄️ and cold water helps numb nerve pain that may be caused by your Cavernoma location or trauma.

6️⃣ Some studies suggest our brains work better at cooler temperatures (obviously not too cold though as hyperthermia slows brain function, its all about finding that balance). 🧠

7️⃣ Cooler temperature has shown to help boost the bodies metabolism, meaning your body is more likely to burn of unneeded fat and fight off bugs and viruses when it's regularly exposed to the cold.

8️⃣ Cooler weather helps you sleep better as the natural temperature drop signals the body to produce the correct hormones to aid in better sleep. In the summer this process can take 2 hours longer than in the Winter months.

How has the Cooler weather helped you with your Cavernoma? Does it make your symptoms worse? Better? Or the same?

18/11/2022

If you're a member of the Cavernoma Society come and join our retreats to help those coping or effected by Cavernoma.

See the details below or have a scroll through the Cavernoma Society Facebook and Insta for more dates and retreats.

NEW Scotland Heal Your Brain Retreat dates!

As mentioned in Simona's LIVE video last week, our Scotland retreat is taking place in February next year.

👉 Friday 17th-Sunday 19th February, 2023 (Starting 5pm and finishing at 1pm on the Sunday).

👉 Available for FREE for members affected by cavernoma.

👉 Can bring a friend, partner, sibling, or parent to accompany you.

👉 Everything is included - food, accommodation, and activities.

👉Suitable for beginners. The programme is specifically designed for those affected by cavernoma.

👉You'll do yoga, meditation, group therapy, and Reiki - all to help you manage your condition better.

👉 Spaces are limited, so we will pick names at random. Entries close November 20th. PLEASE do NOT apply if you cannot make the dates. We have had a few people doing this before. It doesn't help us. Check the dates, check your availability, and then apply if you can make it. A £50 refundable deposit will be taken if you are offered a place. This is so try and prevent last minute drop-outs, as this costs the charity a lot of money.

👉 Location is Lendrick Lodge, Callander, Scotland. It's not too far from Edinburgh if you'd like to fly.

👉 Families can apply (up to two kids), but your kids.

We're so excited to be able to share this with you. Our retreats have been incredibly popular and hugely beneficial, so this will book up fast!

If you have any questions please feel free to message us. If not, hopefully see you in Scotland!

Book here: https://forms.gle/LBEKYHEdobfAJUBH8 or check out our link tree in our bio!

03/11/2022

Did you Know?
Anyone who has a Cavernoma that affects their life can apply for something called DLA (Disability Living Allowance for children) / PIP (Personal Independence Payment) or CDP (Child Disability Payment) / ADP (Adult Disability Payment) if you live in Scotland.

So if you have a parent who has a cavernoma or are a parent with Cavernoma and take a look (or get them to take a look) below.

For England and Wales 🏴󠁧󠁢󠁥󠁮󠁧󠁿 🏴󠁧󠁢󠁷󠁬󠁳󠁿:
https://www.gov.uk/pip/how-to-claim
For Children: https://www.gov.uk/disability-living-allowance-children

For Northern Ireland 🇮🇪 :
https://www.nidirect.gov.uk/articles/personal-independence-payment-pip
For Children: https://www.nidirect.gov.uk/articles/disability-living-allowance-children

For Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿:
https://www.mygov.scot/adult-disability-payment
Child Disability Payment: https://www.mygov.scot/child-disability-payment

If you need help with any of this contact the www.Cavernomasociety.org helpline on 0330 122 4470

Please share with your

03/11/2022

Thank you so much to for all of the money that they’ve raised for us, and to for orchestrating it all! We really appreciate it! Repost: Today Miss Dixon and Mr Bushby presented a cheque for £1,000 to a representative from The Cavernoma Society. This was the chosen Year 7 charity last year and one which is close to our heart. We hope the donation can help to raise awareness and support cavernoma sufferers and their families.

30/07/2022

Happy

Have a Cavernoma Buddy who has either helped you through or has a Cavernoma? Make sure to show them some love today