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.

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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.

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.