Category Archives: Medical

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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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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