Saturday, 9 June 2018

Help us Raise Awareness of Epilepsy!

Hi All

This is not a post for cards but one of a personal issue and one I do not usually share with too many.

However my brave niece, Chloe, has decided to step out of the shadows and make some noise to help spread awareness of Epilepsy by trekking Mount Snowdon with her Dad (my adorable Brother-Robert). She especially wants to raise awareness of the different types of epileptic seizures there are-at least 40!!

There is no cure for Epilepsy but it can be controlled in some people.

I will explain a little about our seizures before I link you to Chloe's personal story:

Many of you know I suffer from Epilepsy but so do many in my Family. We have epilepsy as a result of lesions on our brain that are inherited. These can hit any member of the Family. The lesions can grow or decrease in number and size and can bleed. For example when I started having seizures 32 years ago I had one lesions-I now have over 9. Some of these are new but some may have been there from the beginning but as technology has improved, these can now be seen.

These lesions are in different areas of the brain and so effect me in many different ways depending on which one plays up!! Unfortunately over the last 12 years drugs have not controlled my seizures.

I would love you to take a read of Chloe's story-she is far more articulate and braver than me!


If you feel you can donate we thank you so much. However what we would love it for you to share Chloe's Story with your friends and help us raise awareness of this illness and how it effects those who suffer from it.

Thank you my crafting friends for listening to me and my beautiful niece, Chloe.

xx

17 comments:

  1. Oh Sandie, I had no clue how hard it gets for you. I think awareness is so important, I would now be more of a help if I meet someone having a seizure. Chloe explains it so well and I will pray that the lesions reduce or atleast don't increase! I will share it amongst my friends through FB and WhatsApp.. we all need to be aware!

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  2. Wonderful article written by your niece, Sandie! I learned A LOT! Had no idea there were so many different ways for Epilepcy to manifest itself. I will definitely send Chloe's article along to friends to read. Thank you! xx

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  3. Wow there where so many things I didn't know before. Thanks for writing about it. It stays so stupid that some people never find the right medicine or the right amount for them; there has to do so much more rechearch! Hope you have a bit shunshine and can enjoy it today! Hugs, Gerrina

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  4. Sending hugs your way, sweet friend … off to Chloe's story, and will have a conversation with my sil who also suffers from seizures.
    love your brave heart... xx
    =]

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  5. Sandie, I am so proud of both you and Chloe and your strength in sharing your story. Love you tons!

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  6. Its really brave of you and Chloe to share with us. Thank you for sharing (I'll forward to as many as I can). I've never had anyone with Epilepsy around me, so this really helped me understand. Hugs to you, brave heart.

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  7. Thanks so much for sharing your story and the story of your niece - you are two inspiring women!

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  8. Thank you, Sandie, for sharing your story and a link to Chloe's story! I discovered that I know very little about Epilepsy and hope they soon will find meds that help!
    Sending you and Chloe lots of love and hugs,
    Susanne

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  9. I didn't know that you suffer from epilepsy Sandy. Thanks for sharing Chloe's story and making us all aware ♥

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  10. Sweet Sandie, I think of you often and can only imagine how difficult life can be sometimes living with seizures. The unpredictable can be so cruel. We need to chat soon. Thank you for sharing your story online--so brave and that you for sharing Chloe's too. Her story is tragic and so moving, I think it is fabulous that she and her dad are doing this! xoxo

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  11. I am so happy to see you sharing and Chloe is doing such a brave thing to share and raise awareness. I can see that the world certainly needs more knowledge about epilepsy. I am thankful to have you in my life, as I have already been brought to more awareness and care for this cause. Thanks Sandie!

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  12. What a courageous thing to do, Sandie ... sharing your own story ... and supporting Chloe in her efforts to raise awareness of epilepsy. You both show such bravery and commitment in dealing with it every day ... what fine examples you are to us all. Off to see Chloe. Big hugs, Anita :)

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  13. Chloe articulated beautifully. What a shocker to read there are so many different types of seizures. Not knowing is tough. You and your niece are in my thoughts. Will share. Hope you are well these days... sending hugs and love to you both.
    Trina 💗💕

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  14. Thank you for sharing this information Sandie. I wasn't much aware of this. Hope a drug is soon found to cure this.
    God bless you and Chloe...Take care.

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