Purple day

[JaneC]

I have changed my avatar for now to mark the fact that tomorrow, Tuesday March 26, is international purple day for epilepsy awareness.

My 16-year-old daughter has epilepsy. She is fortunate enough that hers it not as severe as many others'.

It is a much-misunderstood condition and she is perfectly normal otherwise, although you don't necessarily just have a seizure and then everything's fine in between. Mental health problems - anxiety, depression - are much more common in people who have epilepsy than those who don't, and my daughter has been experiencing these since her seizures returned last year.

No real point to my post, just trying to do my bit to spread the word. Thanks to anyone who bothers to read.

[HoneyLove]

I didn't know it was international purple day Jane, thanks for sharing with us :)

I also had no idea that mental health difficulties were a part of epilepsy, what a difficult condition to deal with. I hope that your daughter manages to find some peace again x

[Edie]

I didn't know about international purple day! Thank you for telling us about it.

Most of my wardrobe is purple, so it won't be difficult for me to wear purple tomorrow.

My best friend from primary school had epilepsy. We have drifted apart now, but still just about in contact. She's lucky to have grown out of her seizures and hasn't had one for several years now. I agree with what you say about it being a misunderstood condition. People judged my friend harshly sometimes because of her epilepsy, as everyone knew about it because she occasionally had seizures at school. One day she and I did a lesson about epilepsy, and what to do to help someone who is having a seizure, and people's attitudes changed once they knew what to do, they seemed to be less scared of it after that.

My friend was a very normal girl and has turned into a very normal woman. I know she's had some difficulties with depression, but she's relatively lucky that it's been fairly mild. Still though, it's never a nice illness.

I now have a cat with epilepsy. I know the issues are very different with humans than animals, but because of my cat it's still something I would like to raise awareness of.

I hope that your daughter can get the depression, and the seizures, under control again soon.

[venusbluejeans]

Hi

This is just a courtesy reply to let you know that your post was moved from its original place to a sub-forum that is more relevant to your problem.

This is nothing personal - it just enables us to keep posts about the same problems in the relevant forums so other members with any experience with the issues can find them more easily.

[JaneC]

Thanks so much for your replies you two. I've been feeling really guilty that I haven't been able to organise a fundraising event for tomorrow but I now feel at least I've done something! My daughter has fairly good seizure control from her drugs but has had to reduce her dose as they were affecting her concentration at school. She has some appointments coming up with the mental health team which I hope will help.

---------- Post added at 14:43 ---------- Previous post was at 14:35 ----------

Bit disappointed this has been moved tbh. Yes, I wanted as many people as poss to read it, but considering up to 50% of people who have epilepsy suffer from anxiety and/or depression, I thought the GAD section was a reasonable place to put it.

[Col]

Thanks so much for your replies you two. I've been feeling really guilty that I haven't been able to organise a fundraising event for tomorrow but I now feel at least I've done something! My daughter has fairly good seizure control from her drugs but has had to reduce her dose as they were affecting her concentration at school. She has some appointments coming up with the mental health team which I hope will help.

---------- Post added at 14:43 ---------- Previous post was at 14:35 ----------

Bit disappointed this has been moved tbh. Yes, I wanted as many people as poss to read it, but considering up to 50% of people who have epilepsy suffer from anxiety and/or depression, I thought the GAD section was a reasonable place to put it.

Ahhh thanks for sharing the awareness, I was completely unaware - thankyou!

Here here , Ive seen less appropriate threads on the GAD section than this thread! :shrug: ohh well. Thankyou .

[Cat lady]

I didn't know about purple day. Im glad there is a day out theres dedicated to epilepsy, I shall be wearing purple tomorrow :)

[JaneC]

Thanks Col and Cat Lady and special thanks to Edie and Cat Lady for saying they will wear purple. Think I only have my wristband :( Here's something else about epilepsy. While lots of people agonise about taking ADs it is enough tougher for people with epilepsy as many of them can lower their seizure level. Women may also be limited in their choice of contraception depending on their seizure drug.

[JaneC]

Today's the day, so ... bump.

---------- Post added at 13:11 ---------- Previous post was at 11:28 ----------

Any likes for this Facebook page? They're trying to reach 30,000 today. https://www.facebook.com/pages/PURPLE-DAY-for-EPILEPSY/24057553504

It is five years almost to the day since my daughter was diagnosed. I got a phone call from her school around lunchtime saying something had happened, possibly a seizure, and they'd called an ambulance. I panic like hell when I have to drive on a dual carriageway or motorway but had to do to travel the 15 miles to the hosp For several hours, she was in a confused state. She then had another tonic-clonic seizure, losing consciousness, jerking and going blue at the mouth. She was 11 at the time. She had an emergency MRI and I had to hold her while they attempted to perform a lumbar puncture. The following day, she was diagnosed with epilepsy via an eeg. This was just the start of life of a parent of a child with epilepsy - and Rosie has it a lot easier than many. If you think ADs have scary side-effects, have a look at anti-epileptic drugs. Rosie has been taking one since last summer (fortunately not the worst kind). She has been lucky in that it has worked pretty well. As with Ads, it can be a long search for the AED that works best for the individual.

I'll shut up now.

[Cat lady]

Hope shes ok, give her a hug from me xx

[JaneC]

Thank you Cat Lady, I'll pass that on, she's not too bad at the mo but has important exams coming up and that's when her seizures started happening again last year, so that's a bit of a worry.

Hope you are feeling a bit better yourself.

Thanks again to everyone who posted xx