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.
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.
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!!!
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.