Tag Archives: RSS People Watch

How did RSS people get on at CGF convention?

On the 5th November 2011, 8 RSS teens and adults (including myself) met at the Hilton hotel, Northampton in the UK.  5 of the 8 RSS people attending are TARSS members.

From my own personal experience of having previously met only 1 of the RSS people registered to attend on a prior occasion, I was surprised to find that I was feeling somewhat nervous and a bit apprehensive as to how the weekend would go. Kim, nervous, apprehensive I hear you say in surprise, yes, I know so not like me usually!

On the Friday night I met the first RSS teen/adult.  We glanced at each other in the distance in the hotel and then at the evening meal I mustered up the courage to go and introduce myself and ask if she was the lady I thought I recognised from her photo’s on the TARSS group and she was!!!!

On the morning of the conference I found out that as RSS adults co-ordinator for the CGF, I was responsible for hosting the RSS adults seminars including the first event which was a meet and greet session.  After getting my head around the days tasks ahead I made my way around the hotel foyer looking for possible sightings of  other RSS people.

After meeting the other RSS adults, we went to the first seminar which was the CGF AGM, then ‘us’ adults went to a separate meeting room and had a very informal ‘meet and greet’ session introducing ourselves in turn and a brief history of being RSS.

We then joined the rest of the conference attendees for refreshments.  Then the RSS people had an informal discussion about questions/issues we would like to ask/raise with Dr Stanhope who was due to speak with us in the afternoon, I was then asked by the RSS division co-ordinator if the RSS people would join the parents for a seminar on RSS in adolescence/puberty hosted by Dr Kirk and Dr Toogood as the doctors asked if we would attend.

After lunch, and meeting more RSS families (great experience for all I hope) the RSS people met up again to have a discussion led my Dr Karen Temple who is a geneticist based in Southampton UK.   Dr Temple came to talk to us about a research study she plans to get funding for and undertake into RSS in older people, while also answering some queries we had about genetic and health issues we as older RSS people experience.  The Doctor was very interested in hearing about progress we as RSS people are making for ourselves with the TARSS group and also the rss-people.org website.

Following Dr Temple we were then joined by Dr Richard Stanhope who was keen to meet with us.  After chatting with us and hearing our views, it became apparent that far more research needs to be done for RSS people, as many issues we have, Dr Stanhope had never heard of as being part/symptom of RSS, primarily due to the lack of research and studies after childhood.

A question and answer panel  by RSS people for an audience of younger RSS kids.  First off, I course, mentioned the TARSS group and explained my appointment as RSS Adults Division co-ordinator.

With a panel of six of the RSS people attending, we answered questions from parents on such topics as:

  • “Our lives now”
  • “How we cope in society”
  • “Our views of growth hormone treatments”
  • “If we felt parents should tell their kids about RSS and how they should tell them”
  • “Do we feel our parents made the right decisions on our behalf when we were young”
  • “If we had a child with RSS would we choose growth hormone treatment for them” etc

The day was finished off with a well-earned drink from the bar and a disco for the kids, with one very tired and somewhat emotionally drained RSS adult co-ordinator!

6th November – Day 2

The following morning after breakfast there was one last chance to meet parents and RSS people to see what we got out of the conference. Most of the parents expressed that they found meeting the RSS people and listening to the Q &A panel with them one of the most beneficial and inspiring events of the weekend.

After this last session, myself and another RSS adult who was still at the conference were asked if we would also consider arranging a seminar/workshop with RSS kids aged 10 upwards next year for them to chat with ‘us’ and feel free to ask us anything about life as an RSS person.

To have 8 RSS people in one place was amazing to me. It was the first conference for the CGF that more than 3 RSS adults had attended at the same time.  Being the co-ordinator for the RSS adults division I hope that all the RSS people felt that they were catered for as regards information/seminars rather than just being with the parents and joining in their seminars which really are not relevant to us.

I hope this year is a huge leap forwards in raising awareness for RSS people and the need for support for ‘us’.

My dream and vision for the TARSS group keeps on growing and this conference has really showed how powerful, positive and progressive RSS people can be not just in their own lives, but also in the lives of parents of younger RSS kids and also to the kids themselves.   As we can help them embrace their uniqueness and special talents that they can give to society and others.

I look forward to next year’s conference, hopefully meeting new attendees and also catching up with existing friends.

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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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?

ITV This Morning – Russell Silver Syndrome Feature

Thanks to Kim for sending me this over…. ITV’s This Morning had a feature about 3 year-old Amelie who has RSS.  Phillip and Holly talk to her parents, their other daughters and a specialist about living with the syndrome and the type of symptoms that we get.

Nothing we RSS-ers haven’t already heard, but it’s always nice to see the syndrome having it’s profile raised 🙂

Watch the Living With Russell Silver Syndrome feature here »

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