My 17st legs

Everyday living
1

Afternoon one and all!

Did anyone watch the tv prog last night?

I first watched a prog about Mandy a few years ago. She amazed me then, with her strong attitude to her difficulties and determination to walk, despite agony with her legs which continued to grow wider and heavier.

Last night`s prog was about how she is now.

In 2010 she had the lower part of one leg amputated due to infection. But the stump continued to grow. Mandy was given a prosthetic leg, but this became unsuitable as her stump grew.

She was born with a rogue mutant gene which caused her feet, toes and legs to be malformed and to continue to grow.

A certain doctor took her case to heart and researched until he found the rogue gene concerned. it was thought to be genetic at one time, but this idea was disregarded.

I took particular interest when the word genetic was used. As some of you know, my own condition (not MS after years of being told it was), could turn out to be genetic.

Once the rogue gene was found, Mandy was given a drug used to stop transplanted kidneys being rejected. No-one knew if it would work.

A few months later, tests were done to find out if the drug was successful…

it was! mandy had lost 1.5 stone…the legs had stopped growing!

An american family, who had young twins, visited Mandy. One of the twins had the same problem, yet the other twin was fine!

mandy was hopeful that the toddler wouldnt have to go through all she had in her 37 years.

it was a totally amazing story…a young woman who`s life was filled with challenges. She battled everyday in an effort to re-gain her independence.

Somewhat like us…inspirational!

Having said that, in my own case, i will never be able to get my independence back, as my condition,as in many MS, only worsens.

Have a good evening all!

luv Pollx

2

Hi Poll. i watched it,like you i saw the last programme,what a brave woman she handles it all,and tries to stay positive,how she copes i dont know,i just hope this new drug they have put her on , works miracles,for ,i really do.

jaki xx

3

Hi Poll, long time no chat, I hope that you are doing OK. I didnt see that TV programme but would like to have had. I have been googling a bit about HSP recently as my problem is really only spasticity on one side.My Mum also is someone who has always gone over on her ankles - yet at 76 she is still able to play golf etc! Have you been told exactly what is supposed to be happening in HSP. An Australian website I saw indicated that the brain produced something (like a protein) which kills of the neurones. Websites say that MRIs are used to rule out other things like MS etc but they dont say what they expect to see on an MRI of someone with HSP. I am still wondering what I really have!

Thanks and take care.

Love Moyna x

4

Hello Poll, I met her last year in Accrington whilst I was having an assignation with a ‘lady’. Mandy is as bright and perky as she appeared on TV and just gets on with everything.She was well known and whizzed about chatting to folk and just being accepted.I know what Accrington was watching t’other neet.

She truly is an inspiration.

Wb x

5

Hi Poll I watched the programme a few years ago but unfortunately missed this latest update on Mandy. Could you please let me know which channel it was on so I can watch it on catchup?? Hope you are keeping as well as can be expected? Luv Linda x

6

Hi Linda, it was on channel 4. Mandy really is an inspiration, her whole attitude to life is just gung ho! She made me feel like I should appreciate how able I am compared to her.

7

Thank you I will try and find it now! Linda x

8

We were out last night Poll - so l shall see if l can get it on lplayer. l have been watching the Brain Doctor - sometimes with my hands over my eyes - and a box of tissues at hand. lt gives you a good insight in how the surgeons cope with the stress and worry-especially when they have to deliver very sad news to the patient and family. Have you noticed how amazing some of these little children and babies are. My nieces husband recently died of a brain tumour. He had been very ill for about 8yrs. And it was a great release when he died as nobody would have wanted him to go on suffering the way he did. 38 is no age - and 3 young kiddies.Poor chap had undergone several major ops at the John Radcliffe Hospital and for the last 5yrs was just existing - no quality of life at all.

lt brings it all home to us - doesn’t it Poll - So many people far worse off then we are.

Fx

9

I too watch the Brain Doctors, what an awesome bunch of people they are. They are such an inspirational set of people, as are the patients. It really does make you realise there are so many people far worse off than us… I have tried to find My 17st legs on iplayer but no success as yet!! Hope you are keeping well Frances? Linda x

10

Campion & Linda,

The programme wouldn’t be on iplayer as this is only for BBC broadcasts and, as suggested, the show was on Channel 4.

You would therefore need to look for it at:

http://www.channel4.com/programmes/4od

Good luck!

11

Sorry Folks!

Ignore my previous (incorrect) posting!

The programme was actually on Channel 5 (not Ch4 as previously suggested) and you can find it (…honest Guv) at:

http://www.channel5.com/shows/extraordinary-people/episodes/shrinking-my-17-stone-legs-an-extraordinary-people-special

Cheers

12

Well done for that - l shall try to catch the link - and l thought it was on Thursday and it was Wednesday. We will get there in the end!

thanks

F.

13

Ta for all your replies and info on how to catch up on the prog.

Yes, Mandy is a truly remarkable woman. I wish her all the luck possible in hoping the drug continues to stop her legs growing.

She can teach us all a lesson in perseverance and courage!

luv Pollx