The resources for people with facial palsy are improving every day, which is wonderful news! I started this website several years ago and it’s been amazing all the people I have now met with facial palsy, if you consider that when I set up the website I had never met anyone else with the condition, apart from my Uncle Harry who had facial palsy after a stroke. Continue reading
The launch of the charity Facial Palsy UK brings new hope to people affected by facial paralysis. The charity aims to raise awareness, educate health professionals and set up much needed support groups across the UK. This new charity also has implications for people across the world, because it aims to raise funds for vital research into new treatments, the various causes and maybe one day even a cure! Currently there is a misconception that facial palsy is purely a cosmetic condition when in fact it has far-reaching effects on mental health and inhibits various facial fuctions which we all need in our normal everyday lives. Bell’s palsy is another often misunderstood condition and the charity wants to ensure that anyone diagnosed with Bell’s palsy has access to information and is treated appropriately within the recommended timeframe, therefore giving people a greater chance of full recovery. One of the unfortunate after-effects of Bell’s palsy can be synkinesis, there is treatment and help available, but people often don’t know how to access it, the charity aims to change that. Continue reading
Today I received a special delivery letter from Addenbrookes Hospital which was quite exciting because I have been waiting to hear back from them, but I didn’t expect such a fast response! A couple of weeks ago I requested copies of any records they might still have about my facial palsy, my mum has told me all that she knew and they didn’t really add a lot to this, but it was nice to see it all written down. Unfortunately a lot of it was very difficult to read because it was scans of micro-fiche, but I got the general picture. I am going to attempt to transcribe!
Just wanted to give a brief update on what I have been up to over the summer so far. We kicked off the summer with a wonderful holiday to Dalyan in Turkey. I am so glad we went to Turkey because the weather here in the UK has been pretty miserable really! We hadn’t been abroad for over ten years on a proper family beach holiday and I had forgotten how much good it does you! I have to say a special thank you to Anatolian Sky because the way they looked after us was excellent, we couldn’t have asked for more from a Tour Operator, we’d definitely recommend them for holidays in Turkey and will be traveling with them again.
I’m a little puzzled right now about my own facial palsy. We were told it was probably due to birth trauma because I was a facial presentation. However, close family members also have hypospadias and undescended testicles, and I have found out that these and facial palsy can be problems associated with CHARGE syndrome. I have also been told that CHARGE syndrome doesn’t tend to occur frequently in families even though it is of genetic origin. Continue reading
Someone has some questions about CULLP (congenital unilateral lower lip paralysis). I have tried Googling for this information with little success so am posting to my blog to see if anyone can help with answers. Continue reading
Saturday 7th May was quite a magical day for me. 12 weeks ago some UK members of the Courage to Smile group on Facebook decided to arrange a meet-up and this happened last weekend. Continue reading
Apologies to people following my blog because I haven’t updated it until now. Things got really hairy just after my last post and I ended up having to have the gold weight removed. You can see in the image on the left (taken 22 February 2011) that things got worse and I ended up with alien eye! I have never felt such horrendous discomfort in my life! It seems however that I was just one of the unlucky ones and I had an allergic reaction to the gold. I have talked to many people who absolutely LOVE their gold weight so please don’t let this put you off trying the surgery. Continue reading
Well today has been eventful. Since Saturday my eye has got progressively worse, it went from droopy eyelid to virtually closed-up eyelid and then to Karen “no see” eye!!! I am 7 weeks post gold weight eyelid surgery and up until now the eyelid was droopy but not swollen. Suddenly I find myself not able to drive and only able to type on my laptop because I can look “down” at the keyboard. I managed to get an appointment to see the duty doctor at the hospital and was promptly taken in for the routine eye test to which I objected! Continue reading
Well I have been to see my doctor, I really thought she was going to say I was talking nonsense but she was great. She said she could see what I meant about the dips in my face and she would refer me to a plastic surgeon so they can see what they can do for me. I feel so much happier now that I know it’s not all in my head, haha. My lovely husband of course is going to say I look fine but I know that people have started mentioning it so it must be getting more noticeable as I get older. Continue reading