The Real Thumbelina Documentary on ITV1

For those of you in the UK who missed the above documentary on ITV1 on Monday can watch it on the ITV Player.   It follows 4 year-old Amelie and her parents journey to the USA to find out more about Russell Silver Syndrome.

It was great to see both sides of the growth hormone debate and as a non-GH RSS adult it’s always hard to see parents worrying about their children not being ‘normal’ if they don’t have treatment, especially having gone on to achieve everything I hoped to do and more as a person 4ft 4″ height.   It was very much appreciated to see Zillah’s contribution that you can be 4ft -odd and still be ‘normal’.  I hate that term ‘normal’.  People with Russell Silver Syndrome, are that, people, who need that bit of extra support throughout all stages of life.  That said, what would any of us do if we had a child in the same decision and most of us are aware that it is people’s own choice.

Personally I would have liked to see more non-GH adults participating, say a comparison of what life is like as a RSS person who has had GH as opposed to RSS people who have not – but then that could be a documentary in itself.

A more balanced documentary than expected.  Definitely worth a watch and it’s great that awareness of Russell Silver Syndrome has been raised on a mainstream terrestrial channel and to a wider audience.
Here’s the link: The Real Thumbelina Documentary »

(This documentary  is only available to view in the UK and watch-able for another 28 days)

We’re Looking For Regular Columnists on RSS-People

While the RSS-People.org website has been quiet of late, things are beginning to stir in the background.  To help keep the content on this website fresh we are looking for regular contributors, who would be willing to write one article a month on their chosen subject.

Columnists Needed In Following Subject Areas

The main areas we are for contributors in at the moment:

• Independent Living
• Travel and Mobility
• Family
• Nutrition
• Positivity and Self-Esteem
• Spirituality
• Job Hunting / Careers Advice
• Teen/Young Adult experiences of living with RSS – Day in the Life
• Fashion

The subjects above preferably need to have a RSS angle, so the contributor must have experience of what life is like for a person with dwarfism and the challenges faced.

Skills and Post Requirements

We would prefer that the contributors have RSS, however, we would warmly welcome, posts or articles from professionals in the above fields.

We ask that you commit to a minimum of 1 blog post per month, for a minimum of 3 months.  Each article needs to be around 500 – 1000 words and delivered in a plain text format.

Sadly we cannot provide any remuneration, but we are happy to provide space for a short bio at the end of each of your posts with a link back to your own personal website or blog.

Apply

We’d love to welcome you to our team, so if you are interested in applying – please contact us with the following information:

1. Your name
2. Your email address
3. Short example of your current writing (links to your portfolio or existing writing)
   (we are also happy for people who do not have online writing experience to join us, please write a short piece on your chosen subject so we can get an idea of your writing style)
4. A brief description as to why you want to contribute to the website

There is more information about further subjects we are looking for on our Get Involved page.

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.

Petite Ladies Shoes Page Updated

We’ve updated the Petite Ladies Shoe page on the website with a few of additional websites suggested from members of the TARSS group.  Also happy to announce that Nordstrom are now shipping to the UK. Yay!

Go to Petite Ladies Shoe page »

RSS-People is on Facebook

Like our Facebook page

We’ve set-up a Facebook page for you to get involved with our community.  It’s for those who support people with our medical condition and for those who want to keep up-to-date with the latest news on the website.

So if you get chance, hop over to Facebook and give us a ‘Like’ and introduce yourself, we’d love to meet you.

Like the RSS-People.org Facebook Page »

Russell Silver Syndrome Life Stories: Brian

My name is Brian. I was born just outside St. Louis, MO. My birth weight was 3 lbs., 15 oz., and I was 15 ½ inches long. My Mom is 5’1” tall, and my Dad is 5’9” tall. It wasn’t until I was 9 months old that I was diagnosed with Russell Silver Syndrome. My parents never held me back, and I started kindergarten when I was 4 years old.

I was always the smallest kid in my class, but either I didn’t realize it, or I didn’t care. When I was 7 years old, my family moved to the Denver, CO area due to my dad getting transferred with his job. I adjusted well and quickly made friends. Honestly, that’s never been a problem for me. I have a good sense of humor and was always considered to be the witty and clever kid in my class.

Being small always drew attention from other people, and I relished it. I was also born with a natural talent for playing drums. I started playing when I was 4 years old, and by the time I was 5, I was traveling with my parents gospel group. I’ve never really thought of my size as a hindrance, but as a way to get people to notice me. I felt blessed because while some kids fought to stand out from the crowd, I automatically did thanks to RSS.

My doctor started me on Human Growth Hormone shots when I was 8 years old. While I didn’t enjoy having shots every day for 7 years, I appreciated the results. I went from growing about 1 inch per year to about 4 inches per year on the shots. The only doctor that would treat me for RSS was located in Kansas City, MO. So we made several trips a year from Denver to Kansas City to check in with the doctor and see how I was progressing. I was an only child until I was 11 years old when my parents decided to take in foster children. My brother and sister (who were both adopted by my family as babies through the foster care system) are both average height.

I played both baseball and basketball all the way through middle school, but it was obvious my talent was in playing drums. I have asymmetry and the left side of my body is bigger and longer than my right side. I wore a lift on my shoe until I was 12 years old when I had my right leg lengthened 2 ½ inches. It was a long and painful process, but I’m glad I had it done.

I continued on through middle school and high school and was a very popular kid wherever I went. I was never ashamed of my size and I didn’t shy away from making friends. I found my identity through music and playing drums. My high school and college years were really a great time in my life. I moved to Nashville, TN in 1997 to play drums professionally, and I did that for about 7 years.

I was fortunate enough to have seen 48 states and several different countries through my travel with music. I had a few average height girlfriends throughout my school years, but I didn’t find the love of my life until I was 29 years old.

I met my beautiful wife Jenny online through a dating website. I had narrowed my search to include only women that were 5 feet tall and under. My adult height is 5 feet tall, and I decided I wanted a girl whose eyes I could stare into without having to get on a stepladder.

Jenny met that criteria (as well as many other important criteria) and we began to date. Within 11 months of first meeting online, we were married. Five months later we became pregnant. I had always wondered if I could have children, and if so, would I possibly pass on RSS to them. I didn’t really know any other adults with RSS, much less any that had children. Thankfully we had a beautiful little girl with no traits of RSS. She is now 6 years old and growing like a weed! While Jenny and I both expect her to end up being a little short, we also expect her to be taller than us.

My Christian faith plays an extremely large part in my life. I was raised in the church and am very thankful to my parents for the heritage I was given. We are active in our local church and have a very solid social network comprised of friends and family. I work in the call center for a major research cancer clinic and I’m continuing to work my way up the corporate ladder. I don’t feel that my size has ever hindered me from getting where I want to go professionally. I’ve lived the ups and downs of life just like anyone else. But overall I’m extremely blessed and wouldn’t change a thing.

Review: Raised Awareness of Russell Silver Syndrome on Jeremy Kyle

Today’s Jeremy Kyle show on ITV1 features four children with various disabilities to raise awareness of each of their medical conditions.  One of these children is Mollie, a three year-old with Russell Silver Syndrome.   Her Mum, Kaya, chats to Jeremy about what life is like having a young child with RSS.

In an odd sort of way, it’s comforting to hear such a similar experiences that others go through with the syndrome.  I remember hearing about the stories of being ‘failure to thrive’, the insensitive comments and actions from some members of the general public like being touched or picked up like a doll.

Jeremy’s questioning of Mollie’s Mum was frank and sometimes close to the bone, though nothing parents or people with RSS haven’t been asked before. It was great that all parents the chance to promote their child rather than the disability.  And great for generating more awareness of Russell Silver Syndrome in general.

The RSS feature is about 14 minutes in you can watch the programme on ITV Player here until 30th July 2011 »

Support Group For People With Russell Silver Syndrome

Teens and Adults with Russell Silver Syndrome (TARSS) is an independent support group on Facebook.   With over 50 members and growing, the group is great for sharing information, advice and tips on living with the syndrome.

If you know someone with RSS who would benefit from joining the group, please share the group’s link below.

Teens and Adults with Russell Silver Syndrome Support Group on Facebook »

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.

Fashion Alert – Dorothy Perkins Tunics

© Dorothy Perkins 2011 www.dorothyperkins.com

A friend of mine who works in the fashion industry has given me the heads-up on the latest fashions hitting Dorothy Perkins.   Tunics, the longer t-shirt/jumpers make great dresses for us petite ladies.  I’m particularly in love  with this Red Poppy Print Tunic (£32) from Dorothy Perkins.  Summer looks like it’s going to be colourful. Yay! Can’t wait until pay day!

Here’s the links to the rest of the beautiful tunics on sale:

• Dorothy Perkins »