TARSS meets at CGF

The Child Growth Foundation is having their annual conference on the 5th November 2011, and for the first time more than 3 RSS people have registered to attend the same conference.

At the momemtnt 6 RSS people have registered and 5 of them are members of the Facebook group TARSS (Teen and Adults with Russell Silver Syndrome).  Having been in contact with each other through the TARSS group it is incredibly exciting prospect to finally meet each other in person.

Speaking with parents of RSS children, who are also getting ready for the conference, they are really looking forward to chatting with RSS adults to find out what life is like as an older person with the syndrome.

The CGF have organised a few seminars for RSS adults attending, including a talk by a geneticist from Southampton who is going to explain to us about genetic testing for RSS people. This is due to the fact many of us have never had this testing, and also she is going to discuss the possibilities of undertaking a research study into RSS in adulthood. The Doctor hopes TARSS members will play an important role in facilitating this study and its outcome.

I hope all attending have a positive experience and that the important need to support RSS teen and adults continues to be recognised and pursued by all growth foundations.

I will post another article after the conference with experiences and highlights of the event.

Teens and Adults with Russell Silver Syndrome – Support Group Update

I can’t believe it has been 6 months since I created the TARSS (Teens and Adults with Russell Silver Syndrome) online Facebook group.  From the creation of the Facebook group I have seen positive continuous progress in the number of members, number of posts and number of comments.

We currently have 66 members from various parts of the world, Scotland, England, Wales, Ireland, Channel Isles, USA, Spain, Chile, Estonia, Argentina, Italy and Finland.  The various topics that we’ve been chatting about include:

• Issue of growth hormone use
• Driving
• Clothing
• Social issues
• Health issues
• Humorous experiences
• Employment

The teenage members are finding the group a positive resource in accepting and making the most out of being a person with Russell Silver Syndrome. The older members are enjoying sharing  experiences with each other knowing that most of us have gone through and experience similar issues.

I can only speak for myself but I have found the group to be a really positive step in helping to raise awareness and support for Russell Silver Syndrome after childhood.  Although the group is totally independent, I am in contact with the Child Growth Foundation in the UK and the MAGIC in the USA and hope to help them further the needs of people with RSS.

All RSS teenagers and adults are welcome to join the TARSS group, please contact me through Facebook or via the link available on this website if you wish to join.

Here’s to the next 6 months and more progress!!!

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.

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.

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.