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Case History
I have suffered from HME all my life, which comes from my Mother’s side, and
goes back to my Grandfather and beyond. If you read my website noticeboard
message it goes into the present situation, but what I would like to do is go
into my history and the present time.
Now if you have children out there it’s possible that they get bullied at school
because they look different from the other kids or they walk knock-kneed because
their legs bow in. Well, do you get annoyed when your child keeps coming home
with letters from school because he/she has not brought his P.E kit yet again
and never brings their swimwear, so finish up in detention every week. Well I
went through that same scenario week after week for years and every week I would
get the slipper on my backside for forgetting my kit. Thankfully the days of the
slipper have long gone now but I suffered twice; once for not taking my kit and
another for having HME.
The sad thing is though, when I was a kid, I didn’t know about HME or exostoses,
I just looked different from 99.9% of the rest of them and hated myself for it.
I was constantly bullied because everybody stood taller than me. My worse
nightmare was the assembly in the great hall first thing in the morning, where
all the school congregated for 30 minutes as the headmaster talked about the
school in general. I always sat at the back because I would feel humiliated if I
had to walk down the aisle that went through the middle of the few hundred
pupils, to sit near the front. I have known myself walk out when the back was
full and it meant walking to the front, suffering the consequences afterwards,
getting the cane for being rude, because that’s how people saw it.
All sound familiar? Well if I had my time at school again it would be all so
different. Thanks to the HMESG website, maybe people will learn more about
people like us and not be embarrassed when they next see you play football or
walk down the High Street with you. If anyone shuns me for being what I am, and
thankfully that does not happen that much in adult life but people still ask
questions, I will print off the information given on this condition and pass
them a copy – then maybe they may understand.
I went on to race bicycles and I train most days on the road and hold down a
career. I proudly wear shorts now and ride my bike with power and speed, racing
at a high level. Even though my legs bend inward they have not stopped me from
competing in one of the hardest physical sports on this planet. It’s hard to say
if I had not got this condition that maybe I may have raced professionally, but
I think possibly not. Although unfortunately my knee caps don’t track straight
like everyone else’s and I am starting to feel the odd pain in my knees these
days. The doctor says it’s just plain old wear and tear. Maybe I would not be
feeling pain now if my knees were normal, but I am proud of what I have achieved
with this condition and feel hard done by, missing sport at school because the
kids would laugh at me when I ran.
This is not a sympathy note because I know now things would be different if I
had my time again as a child. I want to encourage youngsters of today that there
is hope living with this condition and that they can achieve results in sport
and become proud of themselves. There will always be ignorance everywhere we
walk and the next time someone remarks insults towards you, don’t go home
depressed and angry, just give them the address of the HMESG website and tell
them to read it. Maybe then, one day, ignorance will be eradicated and we can
get on with living normally without looking at folk to see if they are looking
at us.
Thank you for listening.
Paul Tansley
Case History
My name is Laura and I am 25 years old. My parents discovered that I had HME
when I was six weeks old. It was always a possibility that I could have HME as
it runs on the paternal side of my family. My father has HME as well as his
brothers, my Grandad and a few of my cousins. My sister does not suffer from HME.
I have grown up with HME and I have had operations to remove my ‘extra bones’ as
I would fondly call them. It was when I entered adolescence that I began to
struggle with my body image. I was not very good at PE in school and I was
developing a noticeable limp due to my left leg being shorter.
The decision was made that I would have my left leg lengthened when I was 15
years old. It was to be done during the summer term of school and I remember
being upset that I could not be involved in work experience or summer
activities. Due to the support that I would require from my parents, my
grandparents were enlisted to come down from Nottingham. The support I had from
all my family and friends was amazing. At the time I did not realise how
difficult this period was for my little sister who understandably felt a little
neglected.
I remember waking up from the operation and my dad telling me about this huge
contraption which was now attached to my left thigh. I would not look at it for
days. The first week I was very drowsy due to the amount of pain relief I was
having. However, after that I remember having a determination that this thing
sticking out of my thigh was not going to stop me. I was discharged from
hospital after six weeks and my mum took on the role of turning the little wheel
to lengthen my leg. The bar was to stay in my leg for six months and my leg was
to be lengthened by four inches.
During the time of having this metal frame on my leg we went on our annual
holiday to France in our caravan. Life carried on as normal as it could. I went
back to school in September for my GCSEs and the support I had from my teachers
and friends was huge.
I even went on a school trip to Paris for three days and saw the sights of Paris
on crutches. I had blisters on my hands at the end of the trip.
It was not until I began writing this case history that I realised how brave my
parents were, allowing me to go and how great the school were. By the time I
took my GCSEs I was walking without the aid of crutches and my left leg was
nearly as long as my right.
I am now 25, married and I have a degree in nursing. I work on an acute medical
ward in Somerset. I still have problems with my left knee but it is bearable. I
believe if it were not for my experiences in hospital as I grew up, I would not
have had the desire to become a nurse. I love my job and my life. HME is and
will always be part of my life and it makes me who I am.
My husband and I are considering starting a family soon and the subject of HME
often comes up. My husband had never been aware of HME until he met me and he
has questions and concerns and sometimes I find it difficult to be objective as
it is so personal to me. However, we have a very supportive family and our GP is
interested in HME, although she has limited knowledge of the condition.
I am the only woman in my immediate family who has HME and I would appreciate
any advice on being pregnant and suffering from the condition that I should be
aware of.
Laura Beer
Case History
I am writing in response to the recent newsletter (issue 8). I have often
thought of writing an article for you but have felt uneasy about doing so. I
feel that my unease is due to the fact that, as many others have mentioned,
until this support group was available, many people like myself have dealt with
the situation by themselves, accepting and not questioning the isolation. I feel
that there have been many skeletons left in the cupboard deep inside my
unconscious from experiences related to the past. I am unsure whether I am ready
to let those skeletons out, but I have decided that I need to as I need to help
and support my son, aged seven, through his treatment.
The location of the 2003 conference will bring back many memories of the past as
I used to live virtually opposite the Westley Hotel in Westley Road. I grew up
in Acocks Green and moved to my present home in about 1977. I used to catch the
Number 1 bus in front of the Hotel. This would take me to many places including
regular appointments at the Children’s Hospital to see Mr Thompson regarding my
HME. Later on in life I was transferred to the Woodlands.
My parents moved in 1987 and I look forward to visiting the area again.
I have the highest regard for the surgeons at both hospitals and the treatment
they have given me over the years. There are three generations of HME in our
family; my father, myself and my son. At the time, we knew no one else who has
this disorder. My son and I both attend regular appointments at the Woodlands.
I can relate to Pat Savage’s letter when she mentions that most school holidays
were taken up by surgery of her daughters. From a child’s perspective I remember
that each Christmas I was either recovering from surgery or waiting for a date
to come through the letter box for the next one. I have lost count of how many
operations I have had. I have had over 20 exostoses removed, sometimes having
two or three removed at a time.
I feel that I have not suffered as a result of HME, in fact I feel that it has
probably enriched my life and made me even more determined to succeed. My major
problem earlier in my teens was my low self-esteem and lack of confidence. This
is less of a problem now, although it does haunt me from time to time. Having so
many dealings with hospitals has altered my perspective on life, making me
grateful for what I have and these thoughts always give me hope as there are
many people worse off than me. Of all the disorders, disease and conditions, I
feel I could have been far more debilitated that I have been.
I am nowhere near as supple as the next person, but I was never meant to be
athletic either, in mind or in body! My lack of suppleness causes my family
quite a bit of amusement when I have to get in and out of our kayak!
I feel that my school work suffered due to regular absences and I left school
with only one ‘O’ level. However, this did not deter me as I went on to college
to gain further qualifications and then complete my nurse training. More
recently I am retraining and studying Cert Ed at Level 2. Perhaps I would have
left school with the same results, surgery or not. Thank you for an enlightening
newsletter and support group
Helen Beeston
It is clear from our Case Histories that the psychological effect of HME can be
significant and this is an area we are hoping to cover at our next Conference.
In the meantime we would be very interested to hear your thoughts on the matter.
Fund Raising
Since the last newsletter we have
had the following donations. A
very big thank you to everyone.
| Stevenage All Saints’ Church |
£100.00 |
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| Eva Comrie |
£50.00 |
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| Ian Murrill |
£375.00 |
| Ian ran the
Stevenage Marathon to raise money for the HMESG – a huge thank you. |
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| Mrs Evelyn Cantwell |
£10.00 |
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| The London Law Trust |
£1,000.00 |
| Awarded the HMESG a
grant to help with the costs of the 2003 Conference which was much
appreciated. |
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| Gill Lloyd |
£10.00 |
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| Mr and Mrs I Sampson |
£10.00 |
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Everett, Collins and Loosley, Accountants
Leighton Buzzard, Beds |
£96.00 |
| The staff of this
firm decided to give a donation to charity rather than buy Christmas cards
for each other. A vote was taken between three different charities and the
HMESG came out the winner – many thanks to everyone there. |
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| Our Lady’s Catholic High School, Preston |
£200.00 |
| Donations from Year 7 pupils raised this amazing amount for the Group –
a big thank you to everyone involved. |
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| Carolanne Anderson |
£20.00 |
| Carolanne raised
this by holding a Christmas Tombola – many thanks. |
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| Jackie Edwards |
£10.00 |
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| Mrs E Gilliland |
£15.00 |
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Many thanks too, to anyone we
may have inadvertently missed off
the list.
Donations
We are a voluntary-run organisation and rely on donations to pay for the
day-to-day running costs of the Group – telephone, postage, stationery,
photocopying etc -the newsletter and the Conference (one Conference can use up
nearly all our funds!).
If you would like to know more, or do some fundraising for the Group, please
give Dawn a call on 01438 861866.
Needless to say, all donations are very welcome and much appreciated!
Next: Conference 2003
Previous: From the Chair
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