Review: Raised Awareness of Russell Silver Syndrome on Jeremy Kyle

Today’s Jeremy Kyle show on ITV1 features four children with various disabilities to raise awareness of each of their medical conditions.  One of these children is Mollie, a three year-old with Russell Silver Syndrome.   Her Mum, Kaya, chats to Jeremy about what life is like having a young child with RSS.

In an odd sort of way, it’s comforting to hear such a similar experiences that others go through with the syndrome.  I remember hearing about the stories of being ‘failure to thrive’, the insensitive comments and actions from some members of the general public like being touched or picked up like a doll.

Jeremy’s questioning of Mollie’s Mum was frank and sometimes close to the bone, though nothing parents or people with RSS haven’t been asked before. It was great that all parents the chance to promote their child rather than the disability.  And great for generating more awareness of Russell Silver Syndrome in general.

The RSS feature is about 14 minutes in you can watch the programme on ITV Player here until 30th July 2011 »
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Support Group For People With Russell Silver Syndrome

Teens and Adults with Russell Silver Syndrome (TARSS) is an independent support group on Facebook.   With over 50 members and growing, the group is great for sharing information, advice and tips on living with the syndrome.

If you know someone with RSS who would benefit from joining the group, please share the group’s link below.

Teens and Adults with Russell Silver Syndrome Support Group on Facebook »

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Growth Convention Round-Up

If you are looking for support or would like to meet others with RSS, you have the chance by joining one of the conventions in either the United States and the UK.

United States

MAGIC Foundation – Adults Convention
is on from 10th to 12th June 2011 at the Marriott  O’Hare Hotel in Illinois
A Russell Silver Syndrome division is not included as part of the adult programme, however MAGIC is willing to support the creation/attendance of such group, but need expressions of interest first.  Please contact the MAGIC Foundation or Kim on the TARSS Facebook group in in the first instance.

Download the adult convention programme book »
(PDF)

MAGIC Foundation – Children’s Convention
is on from 14th to 17th July 2011 at Westin Yorktown in Lombard, Illinois.
A chance for parents with children with Russell Silver Syndrome to meet other parents facing the same issues.
People with Russell Silver Syndrome are also welcome.  MAGIC will try and arrange seminars and events for people who wish to attend.

MAGIC Foundation website »

With both conventions, you need to make sure you are a paid member.

United Kingdom

Child Growth Foundation
5th November 2011 in Northampton

The UK’s version of a growth convention for parents with children with various growth conditions, including Russell Silver Syndrome.

RSS Adults/Teens
Depending on numbers of RSS teens/adults attending, seminars etc will be arranged. Further details/information to follow as convention details are made, anyone wishing to attend should ensure they are current members of the CGF.

Contact the CGF for more details or talk to Kim on the TARSS Facebook group.
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Going Under The Knife? Advice For Adult RSS People Undergoing Surgery

Having had numerous surgeries I have found that there are some issues relating to being RSS that need to be made known to the surgeon and anaesthetist prior to consenting to surgery.  The following points have been raised by myself and other RSS teens/adults:

  1. Make sure all medical staff are aware if you (the patient) has any hypoglycaemia issues, as fasting prior to surgery can cause problems.
  2. Make sure that the surgeon/anaesthetist is aware that having RSS you are more likely to have a smaller airway than an average adult so in case of an emergency etc, the medical staff need to have small enough/paediatric equipment to fit small windpipe etc .
  3. Some anaesthetists prefer to use spinal/epidural for operations but care needs to be taken when dosing a shorter person. Doctors need be very careful of the dosage of drugs in order that only the required area of the body is numbed.
  4. Footstools may be useful if the ward permits from a health and safety issue.
    As very often the beds do not go low enough to get on and off easily.
  5. If have any surgery which requires metal plates/screws etc, it is best to make sure the surgeon has the correct size for you as they may have to pre-order specialised ‘plates’ which will take time to arrive.

These points are only guidelines for undergoing surgery being an RSS patient.  Each RSS  person is different, has different circumstances, symptoms and needs.  You are strongly urged to have a discussion with your surgeon and anaesthetist well before your operation to ensure the best care is provided for you personally.

DISCLAIMER

The above is provided as anecdotal advice from other people with Russell Silver Syndrome, please discuss any concerns you have about your surgery with your doctor/physician.

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Russell Silver Syndrome Life Stories: RSS in a Rural Community

RSS-People.org Kim Taylor gives a brief personal account of what it is like to live with Russell Silver Syndrome in a rural community.

Being Born

I live on the mainland of the Orkney Isles, from prenatal scans the local doctors knew I was going to be small at birth ,so as with any complicated health case, my parents were advised that I should be delivered at the Royal Aberdeen Maternity Hospital.

This hospital is a 45min plane journey, which is covered by NHS. Due to varying circumstances my mum was on her own, reading a book, while she was having contractions.

I was 4lb 2.5oz approx at birth and had to stay in hospital until I was 7 weeks old and weighed 4lb 7oz!! My parents could not visit me due to the distance, expense and also having another child.

Throughout my childhood, I have often had to travel to Aberdeen to be seen by specialists because of having RSS, as they did not often visit rural Orkney in those days, as paediatricians from Aberdeen only visited our area twice a year.

Gaining Independence

On the plus side of living in a small island I am quite well known by many in the community so I have never faced many issues with people being rude etc. about my lack of height.

I moved out of my parents home at age 17 and with family and friend support I continue to lead an independent life.

I get to travel away from the island a few times a year, apart from any hospital visits, and to visit the nearest decent shopping area in Inverness which is a 90min ferry and a 2.5hr drive away!!!! How wonderful to have the internet for shopping!!!

Getting Mobile

At present I am looking to get a new car and do have a major problem in that one of my local motability car dealers  does not keep alot of cars in stock so I am having trouble finding the right car as with RSS I need to sit in the car I would like to check for fit, reaching pedals, clear rear view etc.  I was fortunate that another person had ordered a car and I was able to sit in the car and try it out for size before it was sent to the new owner, now I only have the problem of trying to get hold of the same model to test drive!

The Only RSS Person in Scotland?

Also living in a rural area makes it very difficult to attend various events to meet others with RSS. As far as I am aware at present I am the only adult in Scotland with RSS but I really hope to contact more in time.

For more details about the beautiful island where I live, visit www.visitorkney.com

Since writing Kim has been in contact with a person living in Shetland Islands who has Russell Silver Syndrome.

Fashion Alert – Dorothy Perkins Tunics

Dorothy Perkins Red Poppy Print Tunic

© Dorothy Perkins 2011 www.dorothyperkins.com

A friend of mine who works in the fashion industry has given me the heads-up on the latest fashions hitting Dorothy Perkins.   Tunics, the longer t-shirt/jumpers make great dresses for us petite ladies.  I’m particularly in love  with this Red Poppy Print Tunic (£32) from Dorothy Perkins.  Summer looks like it’s going to be colourful. Yay! Can’t wait until pay day!

Here’s the links to the rest of the beautiful tunics on sale:

UK Growth Organisation Appoints RSS Adult Co-Ordinator

Hi,

My name is Kim Taylor and I’m a 32 year old RSS adult, 4’3″ tall with no GH treatment.  I live in Scotland, UK.  I have recently been appointed RSS Adults Co-ordinator for the Child Growth Foundation (CGF).  My main aim in this new position is to raise the profile of RSS in teenage and adulthood.

I hope to help the CGF to take steps to organise research in RSS after childhood and to get these findings published for future reference.  I hope to encourage more interaction and support for RSS teens and adults through the CGF and also the TARSS group (teens and adults with russell silver syndrome) on Facebook.

If anyone has suggestions to help me in my new endeavours they would be very much appreciated. Please don’t hesitate to contact me through this website, TARSS on Facebook or the CGF.

Womans Own – Russell Silver Syndrome Article

On page 60 of either this week’s or last week’s edition of Woman’s Own there is an article about a couple with a daughter with Russell Silver Syndrome.   You can find the feature on and around page 60.

It doesn’t really tell us RSS-er’s anything that we don’t already know, but it’s always nice to see the profile of the syndrome raised.

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What do you think about the article?

Petite Fashion

As most people with dwarfism know, trying to find fashionable clothing and footwear that doesn’t include glitter or butterflies is a challenge in itself.

I’ve noticed that whenever I meet another small person we are always checking each other’s clothes and shoes out and asking ‘where did you get that?’ or ‘which shops do you buy your clothes from?’ to try and find that great piece of clothing or pair of shoes.  So Kim and I thought it would be a great idea to gather a list of the community’s favourite shops and stores where we buy petite clothing and shoes from.

And so the Fashion section has been born.  Kim and I asked the RSS community for the links of there favourite shops and stores where they can buy adult looking clothing and footwear in smaller sizes – many thanks to the people who contributed.

If there is any other shops/stores that sell petite clothing/footwear you think are worthy of a mention – please let us know and we’ll put them in the directory.  In the meantime – check-out the RSS People Petite Fashion section »
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RSS-Diagnosed Journalist Needs Your Help

Hi there! My name is Pete and I am an English freelance journalist and a RSS person. I have just finished my studies and am now entering the big wide world. for the first time. I’m on the look out for that elusive first job but as you can imagine competition for work is incredibly fierce.

I decided to set up an Audioboo account.  Audioboo is similar to Facebook but rather than uploading photos, you upload audio files (sound recordings). On my CV I mention that I have experience interviewing people and when I came across Audioboo an idea flashed into my mind. I hope to upload audio files of interviews I have conducted so that I can include a link to the site on my CV and employers can instantly find evidence of my interviewing ability.

This is where you come in!! I would love to interview a fellow RSSer over the phone and record it. The interview would be friendly and informal and could cover anything you like.

The following is a link to my Audioboo page and if you click on the ‘Welcome’ you will get an idea of what the site is all about: audioboo.com/peteguest.   If you would be interested in being interviewed please email me at peteguest59 [at] hotmail.com

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