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On Sunday 24th January 2021 the TARSS, Teens and Adults With Russell Silver Syndrome Facebook group will celebrate its 10th anniversary since I created this support group for RSS people.

It has been a dream of mine for many years to keep TARSS as an RSS people only group but develop a podcast series about adults with RSS and to raise awareness about RSS in adulthood and give a glimpse into our world and experiences.

Due to serious health issues, not all RSS related, this podcast venture has taken much longer than expected but the last few months have proves the right time to create this exciting venture.

I spoke with fellow RSS adult and TARSS member Steph Robson about my dream of having a podcast series about RSS in adults and she loved the idea and offered to co-produce the series with me and make use of her qualifications and experiences with podcast and website creating. Between us we have become a fantastic partnership where Steph is creative content producer of this project and I have taken the role of creating the episodes inc content, guests, recording episodes etc. Most of the guests featured on series 1 are TARSS members and also the 1st episode features guests from the MAGIC foundation (USA Based) and the Child Growth Foundation (UK Based) who explain what Russell Silver Syndrome is in an in depth episode.

The series is 15 episodes plus a full length intro clip which has been made available prior to the official launch of episode 1 on the 24th Jan 2021 which is on TARSS 10th Anniversary. I hope you readers will check out the podcast series which is available every Sunday from the 24th Jan 2021 at 7pm (UK Time) for 15 weeks. The Russell Silver Syndrome podcast has been created and designed with a wide range of listeners in mind. From RSS people to Parents of young RSS kids to ‘the general public’ who have no knowledge of this rare form of dwarfism.

Creative Content Producer Steph Robson(left) and Myself

Steph and I would love to hear from listeners about the podcast and also you may also send in questions you may have wanted to ask an adult with dwarfism/short stature. If you do have any questions regarding episode content please contact via the contact page on the website.

Thank you to Steph Robson, Angel Hennig, The TARSS group, MAGIC, CGF, My family, Cameron Stout & Radio Orkney and others for all their moral and practical support throughout this project and it is my next goal that if Series 1 is well received that Series 2 will go into production late summer 2021.

Home – The Russell Silver Syndrome Podcast

The Russell Silver Syndrome Podcast | Facebook

https://www.instagram.com/russellsilversyndromepodcast

Hello, Welcome, I hope you find the following blog informative, easy to follow and including a bit of humour as you read about my life and experiences with RSS . This blog is discussing recent media interest in my life as an RSS/SRS adult and my Facebook support group TARSS. If you would like to read further blogs about my growth, health, social and educational experiences, especially in childhood and teenage years please let me know in the comments section below.

On 16th May 2019 I posted a tweet about my TARSS, (Teens and Adults with Russell Silver Syndrome) group nearing 300 members.

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On 21st May I received a private message on my twitter from Huw Williams a reporter from my local radio station BBC RADIO ORKNEY (I follow some local reporters and the radio station on my various social media) Huw said , “We saw your tweet about the success of the support group you’ve started, we wondered if you’d fancy recording a short bit about it?” I replied that I didn’t see a problem with doing that so we arranged for Huw and his colleague Douglas to come to my house on Mon 27th May. Below is the link to the interview. I am on between 00.02.00-00.03.11 and 00.12.42-00.17.01

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Photo supplied by Orkney Photographic

I was unaware the interview had aired on Wednesday 29th May (7.30am show) until I received a private message on my personal Facebook account from press photographer and cameraman Ken Amer (www.orkneyphotographic.co.uk) He asked if he could speak with me regarding my interview on Radio Orkney that morning. I said yes I was able to chat so I rang him and we arranged to meet as he wanted to photograph and film me for the STV news programme. I also had telephone conversations between 29-31 May with STV news reporter Ben Philip and the feature about me aired on 31st May.

Ken had also said that the Press & Journal newspaper wanted to interview me as well. So I had a telephone interview on 29th May with journalist Chris MacLennan and an article about me and the TARSS group was printed on 3rd June.

Orkney woman’s support group for sufferers of rare dwarfism disorder reaches nearly 300 followers

I have since had telephone interviews with 2 other journalists and will be writing another blog if and when those articles are published.

To say the week of 27th May was one of the most surreal and bizarre of my life would be an understatement. I cannot thank BBC RADIO ORKNEY (Huw Williams and Douglas Matheson), Ken Amer (Orkney Photographic), Ben Philip (STV news) and Chris MacLennan (Press & Journal Newspaper) enough for their support and interest in my story and the support group I created for Teens and Adults with Russell Silver Syndrome on Facebook. My group now has 296 members (So close to 300) and I never once imagined that the group would have so many members aged 13 upwards from all over the world. RSS/SRS is so rare and my unique Facebook group is only the successful,supportive & private resource it is because of all the members who have chosen to join. I thank each and every member of TARSS for making the group a pleasure to run. I am so happy various media have taken an interest in us older people with RSS as usually press are more interested in stories featuring the cute tiny RSS kids (and to be honest who can blame them, cute kids may generate more readers and sell more copy)

I have many plans to continue progressing TARSS inc a UK meetup (which I hope some members will make the effort to attend) and supporting as many RSS people as possible. I do not see myself as a spokesperson for everyone with short stature/dwarfism but rather I focus on RSS/SRS as that is what I know and relate to. I want to have the group offer a support resource for years to come and welcome new members (especially those I’ve known since they were children). RSS/SRS is also unusual in some of the treatments/health issues we can experience and also that RSS/SRS can respond to growth hormone treatments. So I am happy that the members in the group represent all ages, heights, life experiences and health.

Thank you again to everyone involved in the recent media interest and the members of TARSS.

My blog is personal to me. I am not speaking for others with various forms of dwarfism/short stature. I can only give my personal views and experiences of my life as an adult with Russell Silver Syndrome.

Please feel free to leave comments or questions and to share this blog with others.

Chat again soon x

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Twitter @Ladythumbelina1

https://www.instagram.com/ladythumbelina_/

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Hello, Welcome, I hope you find the following blog informative, easy to follow and including a bit of humour as you read about my life and experiences with RSS/SRS (Russell Silver Syndrome, Silver Russell Syndrome) . This blog is a brief look at the past year (2018) and some of my blog plans for 2019.  If you would like to read further blogs about my growth, health, social and educational experiences, especially in childhood and teenage years please let me know in the comments section below.

 

2018 saw the relaunch of this blog site, ups and downs with my health and also good times with family.  I took up blogging again and posted my first blog, after a 5 year hiatus, on 21 July 2018.  I am so pleased I decided to take up blogging again and I am finding it therapeutic but also I hope informative to parents of younger children with RSS/SRS and people who know don’t know much about life as a person with a rare form of dwarfism.

The most surprising and a significant project I took part in this past year was the “in conversation with” interview with local radio.  See Blog titled “All I hear is Radio”

 

My future plans for the blog in this coming year (2019) are to discuss topics such as driving, living independently, my friends/family, my views on subjects related to short stature such as films, television series and in the general media/online world.  I am also looking forward to blogging an interview series with various people associated with RSS/SRS

My blog is personal to me. I am not speaking for others with various forms of dwarfism/short stature.  I can only give my personal views and experiences of my life as an adult with Russell Silver Syndrome.

Please feel free to leave comments or questions and to share this blog with others.

Chat again soon x

All we hear is Radio…

Hello, Welcome, I hope you find the following blog informative, easy to follow and including a bit of humour as you read about my life and experiences with RSS . This blog is  discussing an in-depth interview I was asked to do with local radio about my life and experiences living with RSS/SRS .  If you would like to read further blogs about my growth, health, social and educational experiences, especially in childhood and teenage years please let me know in the comments section below.

 

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On the 27th Sep 2018 I got a private message on Facebook from Cameron Stout (We are friends with each other on FB) and he explained that he is doing work for the local radio station, BBC Radio Orkney and wondered whether I would like to do an interview for their ‘in conversation with’ series.  He went on to tell me that the interview would be around 50mins in length featuring the guest chatting and being asked some questions by the interviewer to guide the conversation.  He said he thought an interview with me would be really interesting to hear about my life and also inc my blogging.  He also wanted me to explain about RSS/SRS and discuss how it had affected my life and relate some of my experiences.  Cameron said at my age of 40 I am the youngest person to take part in this interview series.

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To say this message and request was unexpected would be an understatement.  I had various questions like, When will it be recorded? Will it be a live interview? and Has he got an idea of what questions he will be asking me? Cameron went on to tell me that the interview would be prerecorded and the interview would just be a natural chat between us with him asking the occasional question to steer the conversation.  We arranged for us to have a pre interview chat on Wed 3rd Oct 2018 and it took about 90mins of me chatting about my life and experiences from mums pregnancy right up til present day.

Even after the pre interview chat with Cameron I still felt nervous and that my life really isn’t that interesting but on reflection since the interview has aired I guess I have gone through a lot in 40yrs and have had many experiences to relate.

The interview was recorded on the 9th Oct 2018.  I was nervous but thanks to our pre interview chat I felt confident in how the conversation would flow and roughly the questions I was going to be asked.  The near 50min interview was recorded in ONE TAKE, no breaks or stops for edits etc.  From listening to the interview since it aired I feel that no important information was edited out, in fact I think maybe only a couple of sentences or so were removed more for timing issues to be able to include the song that ended the interview.

After we recorded the interview Cameron asked if I could think of a song I liked to play at the conclusion of the interview.  I took a couple of minutes to consider a few songs.  The one I chose I feel really reflects my attitude to my life, my experiences and I hope people would like the song but also listen to the words and realise how powerful the lyrics are for me and so many others who face challenges in their lives.

I hope people who listen to the interview find it informative in a relaxed way but also get to know me as a person better and how my life experiences as a person with short stature/dwarfism/russell silver syndrome have shaped my life and also how humour has helped me cope and get through my life.   I also hope that any parents of younger children like me can have hope that their kids can have a fulfilling, meaningful and happy life even though they will no doubt face obstacles in life to varying degrees.

I would like to thank Cameron Stout for asking me to take part in the ‘in conversation with’ series and for making the interview less daunting, helping me to feel at ease and confident in sharing  some of my life.  Also BBC Radio Orkney for their support, recording studio and confidence in Cameron’s choice of me for the series.

 

 

My blog is personal to me. I am not speaking for others with various forms of dwarfism/short stature.  I can only give my personal views and experiences of my life as an adult with Russell Silver Syndrome.

Please feel free to leave comments or questions and to share this blog with others.

Chat again soon x

Bonus Blog, Feeling Poetic

Hello, Welcome, I hope you find the following blog informative, easy to follow and including a bit of humour as you read about my life and experiences with RSS . This bonus blog is a couple of poems I have written in recent months.  If you would like to read further blogs about my growth, health, social and educational experiences, especially in childhood and teenage years please let me know in the comments section below.

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What Do You See?

What do you see

when you look at me?

Height, appearance, personality?

My obvious short stature

does not define me.

 

My height may deceive and try to hide

what you see as my appearance,

doesn’t match my inside.

You see outward I’m small

But my inner self reveals so much more.

About who I am, my loves and my hope,

my dreams, my faith, my ability to cope.

 

Yes what do you see when you look at me?

See beyond my appearance

Imperfections interference

Get to know beyond what my height has told

My qualities, personality, my Will not to fold.

 

So many terms can be used to define

This short stature  of mine.

But here’s the one that I think you’ll agree

Fits me, as a description perfectly

Yes what do you see when you look at me?

Simply Kim will suffice,

The name’s rather nice.

No other terms are as correct or precise.

So just to conclude,

what is my attitude?

There’s more to me when you take time to see

Beyond what my height may imply about me.

 

 

Where’s My Place

I’m not very tall,

Or minutely small.

I wonder where on the spectrum

does my diagnosis fall?

 

I have a growth disorder called RSS,

Which stands for Russell Silver Syndrome

I add to express.

A rare type of dwarf

That can often grow tall.

So what do I class myself

As I am small?

 

I’m unique, special and free to be me.

Don’t particularly feel a strong affiliation

With ‘average’ height or dwarf ‘community’

I try to support others with RSS like me

We want to be respected, accepted,

Supported and free.

 

 

 

My blog is personal to me. I am not speaking for others with various forms of dwarfism/short stature.  I can only give my personal views and experiences of my life as an adult with Russell Silver Syndrome.

Please feel free to leave comments or questions and to share this blog with others.

Chat again soon x

Island Living and RSS

Hello, Welcome, I hope you find the following blog informative, easy to follow and including a bit of humour as you read about my life and experiences with RSS . This blog is a brief look at the beautiful islands that I call home and also how living remotely has affected my living with RSS/SRS .  If you would like to read further blogs about my growth, health, social and educational experiences, especially in childhood and teenage years please let me know in the comments section below.

I think one of the first times island living affected my life was before I was even born. Due to my measuring small in-utero and other circumstances doctors at the hospital on mainland Orkney were not prepared or equipped  to encounter any “surprises” or complications during my birth so my parents were referred to the Aberdeen Maternity Hospital and after birth I remained in a special care baby unit there for 6 weeks before returning back to Orkney.  So unless during pregnancy my mum sprouted wings or built a Tardis, this is the time where I would have my introduction with travel by plane.  Orkney is approx 35/40 mins from Aberdeen by plane and this particular sector journey will go on to feature as quite a prominent fixture in my life in the main due to my RSS.  I’ve had many trips over the years to various hospitals in Aberdeen such as Aberdeen Sick Children’s , Aberdeen Royal Infirmary and Aberdeen Woodend. for procedures including grommet operations , specialist appointments and major legs surgeries to correct valgus deformities/knock knees which in my surgeons opinion was caused my mechanical hip/ knee/skeletal issues due to my RSS, for those surgeries the trusty plane was called on again but this time with the use of the Air Ambulance ( a vital resource for emergencies in remote areas) I was able to return back to Orkney each time after my operations.  I also saw specialists at my local hospital who came up from mainland Scotland, usually Aberdeen, and held clinic days such as pediatric and orthopedic surgery.  This service is invaluable to us islanders and is still used at present to save families travelling out with Orkney for some outpatient clinic appointments.

As you can imagine Orkney does not have a huge population approx 22,000 currently and for many years my family knew of only one other person on the islands with dwarfism, though a different type to mine, but we have never really spoken together about our lives or in-depth about life being different. I now know of a couple of other people with restricted growth issues and have had contact in recent years with a  lady up on the Shetland Islands with RSS.

Living so remotely has obviously impacted my meeting others like me over the years. We never attended any growth foundation conferences, though in childhood years some doctors had mentioned the existence of the child growth foundation, and no contact with them until I was about 19.

Since birth I have been well-known in the local community  and I think because of my uniqueness and personality it’s a case of once seen never forgotten lol.   Island life has also been a protection from the abuse and ridicule some of my short stature peers in bigger cities/countries have to endure as most people have known me all my life. I get the  occasional stare from a child when I’m eye level with them but hey it’s kind of obvious I’m small so I would be surprised if they didn’t look.

Island life and living so far away from others with RSS also had a part to play in why I created the TARSS (Teens and Adults with Russell Silver Syndrome) Facebook group back in January 2011.  I had some health issues that presented as I got into my late teens and I wondered if other RSS teens and adults had similar issues, if they had interest in meeting other RSS people online if they could not meet in person due to where they live or being more confident sharing experiences in an online group setting.

I’m proud to be an Orcadian, and thank the people of my home islands who continue to treat me like anyone average height and who have had an impact on my experiences through life as a person who is “peedie” (local affectionate term for small)

 

Photographs of the Orkney Islands, where I live.

Many thanks to those who gave permission to use their photographs in my blog.  When I asked on a Facebook page for photographs to use I had too many to choose from so I hope the ones I selected will give you a glimpse of the beauty of my homeland.  Also here is a link to a YouTube drone footage video of the islands courtesy of Psyona Williams

Above 3 photographs courtesy of Esther Gardiner

Above 5 photographs courtesy of Psyona Williams

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Above photograph courtesy of Sandra Spence

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Above photograph courtesy of Gary Drever

My blog is personal to me. I am not speaking for others with various forms of dwarfism/short stature.  I can only give my personal views and experiences of my life as an adult with Russell Silver Syndrome.

Please feel free to leave comments or questions and to share this blog with others.

Chat again soon x

Hello, Welcome, I hope you find the following blog informative, easy to follow and including a bit of humour as you read about my life and experiences with RSS . This blog is a brief overview of some of my more memorable health issues that can be associated  with RSS/SRS .  If you would like to read further blogs about my growth, health, social and educational experiences, especially in childhood and teenage years please let me know in the comments section below.

Russell Silver Syndrome or also known as Silver Russell Syndrome in basic terms is

Russell-Silver syndrome (or Silver-Russell syndrome) is a rare genetic disorder characterized by delayed growth in-utero (IUGR) that spares head growth (meaning the newborn has a head size that is large for his body) and ongoing postnatal growth failure.  This disorder includes feeding difficulties and/or low BMI, dysmorphic features including a protruding forehead, and frequently body asymmetry (hemihypotrophy).  The true incidence is unknown but is estimated at 1 per every 35,000 – 100,000 live births.

It was way back in 1953 and 1954 that Dr. Silver and Dr. Russell independently described groups of small-for-gestational-age [SGA] children whose pregnancies had been complicated by intrauterine growth restriction [IUGR]. Their common findings were short stature without catch-up growth, normal head size for age, a distinctive triangular face, low-set ears and in-curving fifth fingers. These two groups of patients are now considered to have had variations of the same disorder that we now call Russell-Silver syndrome [RSS] in North America, and Silver-Russell syndrome [SRS] in Europe.

  • body asymmetry – LARGE side is the “normal” side*
  • large head size for body size*
  • broad protruding forehead*
  • low-set, posteriorly rotated &/or prominent ears
  • clinodactyly (inward curving) of the 5th finger (pinky)*
  • syndactyly (webbing) of the 2nd and 3rd toes*
  • inadequate catch-up growth in first 2 years
  • persistently low weight-for-height*
  • lack of muscle mass and/or poor muscle tone*
  • hypoplastic (underdeveloped) chin & midface
  • downturned corners of mouth*
  • thin upper lip
  • high-arched palate
  • small, crowded teeth
  • unusually high-pitched voice in early years
  • café-au-lait (coffee-with-milk) birth marks
  • dimples in the posterior shoulders and hips*
  • narrow, flat feet
  • scoliosis (curved spine, associated with spinal asymmetry & accentuated by a short leg)
  • prominent heels [mUPD7 primarily]*
  • autism [mUPD7 children primarily]*
  • myoclonus dystonia (movement disorder)  [mUPD7 primarily]

Characteristics of both Small-for-Gestational-Age Children and Russell-Silver Syndrome Patients:

  • lack of interest in eating
  • fasting hypoglycemia & mild metabolic acidosis
  • generalized intestinal movement abnormalities:
  • esophageal reflux resulting in movement of food up from stomach into food tube
  • delayed stomach emptying resulting in vomiting or frequent spitting up
  • slow movement of the small intestine &/or large intestine (constipation)
  • late closure of the anterior fontanel (soft spot)
  • frequent ear infections or chronic fluid in ears
  • congenital absence of the second premolars
  • delay of gross and fine motor development
  • delay of speech and oral motor development
  • kidney abnormalities
  • delayed bone age early, later fast advancement
  • early pubic hair and underarm odor (adrenarche)
  • early puberty or rarely true precocious puberty
  • classical or neurosecretory growth hormone deficiency
  • ADD and specific learning disabilities
  • blue sclera (bluish tinge in white of eye)
  • hypospadias (abnormal opening of the penis)
  • cryptorchidism (undescended testicles) -Source http://www.magicfoundation.org

For information about Russell Silver Syndrome see links below. 

https://www.healthline.com/health/russell-silver-syndrome#symptoms

http://littlepeopleuk.org/information-about-dwarfism-conditions/types-of-dwarfism/primordial-dwarfism/russell-silver-syndrome

https://magicfoundation.org/Growth-Disorders/Russell-Silver-Syndrome/

http://childgrowthfoundation.org/conditions/rss-iugr-sga

In Childhood

Personally I had many of the characteristics mentioned in the list above.

I was also born with a cleft palate, the soft palate, also I have a high arch to the palate (only palate not lip) Drs thought that my palate did not develop properly in utero perhaps my tongue was in the way as it was forming. It could not be repaired at birth as they wanted to wait until I was 10lbs in weight so I had the operation as 2yrs 2weeks old, that was when I reached 10lbs.  My parents recall that until my surgery I could not form words though I could make sounds which  I thought were words as I repeated the same sound for certain words, ie David was always pronounced by me as LALA. Following my surgery I had a short course of speech therapy and have not stopped talking since haha.  A funny anecdote my mum remembers was when I had my palate operation the nurses put tubes on my arms, like toilet roll tubes, to stop me putting my fingers in my mouth and disturbing stitches as I sucked 2 of my fingers.  Mum gave a me a small chocolate bar as a treat forgetting that I couldn’t reach my mouth with my arms and couldn’t help but laugh as I tried to reach my mouth.  In the end she did help me and save me from my torment LOL

https://www.webmd.com/oral-health/cleft-lip-cleft-palate

I had a lot of ear trouble in childhood, I can still remember the pain and the feeling of being very hard of hearing.  The best way I can explain it now is that is was like being permanently under water and all sounds are very dull and a bit echo-y. The pain was and still can be unbearable as its piercing and stabbing sensations and you just cant escape  it. I did not realise myself I could not hear,  rather it was my dad who realised.  I was about 5 or 6 when he noticed that I didn’t answer him when he called me so he went to the side of me and got my attention then he realised I couldn’t hear but had learned to lip read without thinking about it or saying I couldn’t hear.

I had numerous surgeries to implant grommets, see pics below, and can still recall the hospital visits.  I was so small that at an age of being in a bed at home I could still fit in the old large hospital cots and be bathed in the sink in the room. Living on a remote Scottish Island these hospital trips meant flights to Aberdeen Sick Children’s Hospital, where I was also born due to Drs knowing I would be born small and may need more specialised treatment than the local hospital could provide back in 1978.

 

I was born with dislocate hips my left hip worse than my right and that had to be operated on at approx age 10months.  From birth I had to wear splints including the one pictured below which was affectionately known as a frog splint, on top 2 terry towel cloth nappies, as while wearing it my legs looked like those of a frog.  The Drs chose this form of treatment as usually in cases like these they would opt to use a plaster cast to immobilize the joints but the plaster cast would have been as heavy as me, probably heavier.  My great-uncle remembers me finding my own ways to get about, determined little lass even then.

 

In Adulthood

These health risks in adulthood include the following-

Metabolic syndrome/Syndrome X, which includes:

  • Obesity
  • Insulin resistance/Type II diabetes
  • High blood pressure, especially systolic
  • Dyslipidemia
  • Coronary heart disease
  • Cerebrovascular disease
  • Polycystic ovarian syndrome (PCOS)  [females]

Other possible health risks include:

  • Uterine and vaginal dysgenesis [11p15 RSS females]
  • Gonadal hypofunction/testicular cancer [males]
  • Fertility/transmission of Russell-Silver Syndrome to offspring
  • Low muscle mass/low bone mineral density
  • Autonomic dysfunction*
  • Myoclonus dystonia [mUPD7 RSS]
  • Functional issues related to the skeletal system* (body asymmetry, scoliosis/kyphosis, muscle/back pain) -Source http://www.magicfoundation.org

My full adult height is approx 4’3.5″, growth hormone treatment was not a viable option for me, which I will discuss in a future blog.

At around age 35 I took part in a research study for adults with RSS/SRS and was offered genetic testing. After years of being diagnosed via clinical characteristics I also tested for the RSS 11p15 genetic diagnosis. The clinical facial characteristics which aided in my diagnosis in childhood have lessened with age, as with a lot of RSS adults.  I still however have one obviously clear clue to my being RSS, apart from the obvious short stature.  I still have fifth-finger clinodactyl (when the pinky fingers curve toward the fourth fingers)

The curve on my right hand is more obvious but to be honest I don’t dislike them or feel self-conscious about them.  If my hands are full the curved pinkies act like a hook to hold my car keys HaHa.  As a child I remember my mum trying to splint them with lolly sticks and tape to try to make them straight and also I tried a few times to flatten them inside a big book, needless to say those endeavours were futile.  Now I see them as part of me being unique and also an easily identifiable id for me. My left finger may have been straighter due to me playing the violin for a while and stretching it to reach the chords.

 

Other features I have of RSS are small jaw (for which I had teeth removed in childhood due to overcrowding) and in adult life at various stages all my wisdom teeth removed for the same reason. I have asymmetry, my right side is my average though my left hand is bigger than my right. I have many other health issues, some RSS/SRS related some not. I have also had major leg operations to correct valgus deformities (knock knees) which, in the surgeons opinion was most likely related to my RSS, due to shallow hips sockets, short legs and patella tracking. Warning some photos below of wounds.

 

My blog is personal to me. I am not speaking for others with various forms of dwarfism/short stature.  I can only give my personal views and experiences of my life as an adult with Russell Silver Syndrome.

Please feel free to leave comments or questions and to share this blog with others.

Chat again soon x

Hello, welcome to my blog site.  My name is Kim and I have a rare growth disorder called Russell Silver Syndrome (RSS) also known as Silver Russell Syndrome (SRS) which is a form of primordial dwarfism.  The username for my site, ladythumbelina, I feel reflects both my growth/dwarfism issue and also that I am an adult lady.

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I am now 40 years old and 4’3″ tall. I have various health issues, some of which are part of my form of dwarfism (RSS)

I have felt in recent months that taking up blogging again would be a good & positive form of therapy. Like an online journal, a way to let my views and thoughts about life being short stature.  Also to be a resource for people with or without dwarfism as a way to see how I live my life with dwarfism and my experience with other health challenges.

In upcoming blogs I will talk more in-depth about subjects such as my type of dwarfism,(Russell Silver Syndrome), dwarfism in general, TV shows that feature people with dwarfism, driving, living independently, my family & my dwarfism, how I try to support others with RSS and many other topics.

So far I’m planning to write this blog on a monthly basis but may post more often if occasion or interesting events/topics arise.

My blog is personal to me. I am not speaking for others with various forms of dwarfism/short stature.  I can only give my personal views and experiences of my life as an adult with Russell Silver Syndrome.

Please feel free to leave comments or questions and to share this blog with others.

Chat again soon x

  • For information about Russell Silver Syndrome see links below. 

https://www.healthline.com/health/russell-silver-syndrome#symptoms

http://littlepeopleuk.org/information-about-dwarfism-conditions/types-of-dwarfism/primordial-dwarfism/russell-silver-syndrome

https://magicfoundation.org/Growth-Disorders/Russell-Silver-Syndrome/

http://childgrowthfoundation.org/conditions/rss-iugr-sga/

Well its been a while since my last blog so I thought I’d update you all on my news.

I was due to have a 4th lower femural osteotomy on 5th december 2012 but on the day of surgery it was cancelled due to dangerous thyroid levels in my blood results. 

If surgery had gone ahead it could have had very serious consequences, so although very devastated not to get op over and done with I was sent home. 

Since then my thyroid medication has been increased and my levels are ‘normal’ so if a second test done in the beginning of february is good then my surgery can be scheduled.

My facebook group for teens and adults with RSS (TARSS) now has 136 members all with RSS themselves. I am still amazed at how many have joined and are finding the group helpful,supportive and invaluable.  To think little me started it all with a thought that there was no support for RSS people and so started this group.  On 24th January 2013 TARSS will celebrate its 2nd anniversary. The group would not be the success it is nor have recognition by so many if it wasn’t for the members of the group so I thank them wholeheartedly.

I am still looking at ways to raise awareness about RSS in older people, ways to get treatments for various issues and support for ourselves. But think that this will have to take a back seat for a few months after my operations as I am going to be busy suffering,lol.  I am praying the pain, worry, stress and rehab will be worth it.

Will post again soon,

Take care Kim

Hi all,

            Since my last post life has been far from easy and peaceful.  As many of you may remember I attended last years Child Growth Foundations convention walking like a penguin complete with a cast on my broken arm, urgh.  Well my arm has healed well but my leg not so much,lol.  In May this year I was back in Aberdeen Woodend Hospital and had a new Actifuse injection procedure on my unhealed leg.  From my last major op on my leg in Dec ’10 doctors found that the bone never healed so the only things holing my femur in one piece was the metal plates and pins. And the in Oct ‘11 just a week or so before I came down to the conference I fell, that’s when I broke my arm, and since then doctors found I also snapped one of my leg screws and cracked another.

The new procedure I had this May was to inject a ‘grout’ like paste make up of a powder compound of chemicals and calcium mixed to a paste with some bone marrow from my hip.  I also post op have to use a new ultrasound treatment for 20mins each day to help stimulate the cells in my unhealed bone to re-grow and form new bone.  My surgeon thinks my original need for the surgeries, to straighten my valgus deformities, is more than likely RSS related.  I won’t know until the 23rd of Jul ’12 if this new treatment has worked.  If it has been unsuccessful then I will have to get the whole major operation, femoral osteotomy, redone. But if is has worked then PARTY ON!!!!

My work for RSS people is progressing well and I’m amazed how much support both the group members and myself are getting. The TARSS (Teens and Adults with RSS) facebook group now has 118 members from all over the world  with people who have had gh and non gh treatments, various ages and lifestyles.

I am once again hopeful that this years convention will see a good number of older RSS people in attendance and I am busy preparing the days events for the adults along with members of the CGF .  It is also hoped to have a session with the RSS adults and younger RSS kids, maybe aged 10 and up, to see if they have any issues ,concerns or questions that they may feel more comfortable asking RSS adults direct and also we can work with them on being positive despite having differences from ‘average’ height people and that having RSS should not stop you making the most of your life.  If you parents want to discuss this possible session with your kids to see if this session would be worth doing and maybe ask them “If you could ask an RSS adult anything, what would it be”? Or “What would you like to know about an RSS adults life”? Please contact me direct or the CGF know so I can work the session around these topics.

Also this year it is hope that the RSS adults will host a Q&A panel again for you families to ask us anything so get your thinking caps on with topics, info or questions you may have. Nothing is out-of-bounds just simply if any on the panel don’t feel comfortable to answer they won’t heehee.

On a more humorous note I recently bought a long tube of Jaffa Cakes and the tube reached my chest, lol. I want to clarify I did not eat them as no one wants to eat their own height in biscuits.

I hope to be back driving in the next week as I haven’t driven since mid may. Looking forward to seeing you all again this October and hoping to meet up with familiar RSS people faces and also some new ones who may consider attending for the first time, it would be amazing to get as many there as possible to show the need for continued support for RSS people after childhood.