Tag Archives: RSS

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.

Call For Participants in RSS Study

RSS-People.org have been asked to help spread the word about the USA-based medical study into scoliosis and kyphosis. The RSS division of the MAGIC Foundation hopes to expand on the current research into Russell Silver Syndrome, building on the solid foundations of studies into genetics and growth hormone.  Below you can read about the background to the study, what it hopes to achieve and, most importantly, how you can participate.

Soon enough you will learn about the new MAGIC RSS/SGA Research and Education Fund …. but to start things off, Children’s Hospital Los Angeles (CHLA) and Jennifer Salem from MAGIC are doing a study on RSS individuals and scoliosis and kyphosis.

To participate you need to sign the consent forms and complete the survey that is available on-line or in hardcopy. It should only take about 5 to 10 minutes to complete. You do NOT have to have scoliosis or kyphosis, you or your child just need to be diagnosed as possible or confirmed RSS.

MAGIC is eager to create more studies on RSS to get published, not just ones on genetics or growth hormone therapy.  But we need your help!!! Please can you give 10-15 minutes of your time? You can fill out the consents and do the survey right from your own home!!

If you are interested in participating, simply email Jennifer at magicrss  [at] mindspring.com  and say “I am interested” and Jennifer will forward you the CHLA introductory letter and the study documents.


Please note www.rss-people.org is not affiliated to MAGIC, but is here to help organisations dedicated to advancing the knowledge and help and support of living with Russell Silver Syndrome.

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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.

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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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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