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concerningwolves · 1 year

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Hi! I really like your blog and you have some much appreciated writing opinions to me. Apologies if this is not an allowed question but would you have any suggestions on what to keep in mind when writing a character with Russell Silver Syndrome? I have been doing my research but unfortunately as with many conditions most things I can find are based towards parents of children with and not adults who have it. Sorry if this is disruptive,Thank you for your lovely blog

oh man this question makes me so happy anon you have no idea. RSS/SRS representation!! Yes!!!

Writing a Character with Russell-Silver Syndrome/Silver-Russell Syndrome

Russell-Silver syndrome (RSS) is a rare condition associated with poor growth both before and after birth. Signs and symptoms vary and may include low birth weight, short stature, characteristic facial features, large head in relation to body size, body asymmetry, and feeding difficulties. Other features may include poor appetite, clinodactyly (curved finger), digestive system abnormalities, delayed development, and/or learning disabilities. The genetic causes of RSS are complex and relate to certain genes that control growth. — information on RSS from rarediseases.info.nih.gov

What this this answer will cover:

My experience with RSS and various thoughts on living with it

RSS in adults (+ adult characters)

Things to remember when writing any disabled character

Resources

My experiences with RSS and various thoughts about living with it

Russell-Silver syndrome has felt like a non-issue to me for a long time, but I'm realising now that that was only because so little was known about it. There was no molecular test when I was born so my diagnosis was purely clinical, (using "a checklist", as my dad always told me). Still, I've grown up under this... not quite a shadow, but definitely a pervasive awareness, that I had this rare disorder. It made every meeting with a new health professional that much more exhausting, because nobody ever knew what it was (and this is still a problem I have when explaining my health history to new doctors today). Either me or my parents would end up teaching doctors, and for a long time, we were working with outdated information because very little was available to us. Since I first got access to the internet in about year two at school, I've repeatedly sat down and searched for Russell-Silver Syndrome – and I've watched as, over the course of those last seventeen years or so, increasing amounts of information have appeared.

The increase in information is wonderful! It gives me hope! But growing up with this sense that there was something strange wrong with me was deeply alienating. I have a lot of grief about it.

What you say about not being able to find many sources for adults with the condition also raises a very important point: RSS literature focuses very heavily on symptoms in infants and children because that's when the condition is most "obvious" and/or when it has the most noticeable impact on a person's life. In other words, most information is written up to help parents cope with the extra needs that RSS kids have because of their condition. Infancy is also treated as a sort of golden period for clinical diagnosis, because individuals with RSS will usually lose the more obvious physical traits as they age.

Although RSS has a firm diagnostic criteria, it can look quite different between individuals. (I'd actually say it's fairly similar to autism in that respect). The term used for this is phenotype:

... a phenotype is all the physical characteristics and abnormalities found in an individual patient that are attributed specifically to RSS. Some individuals with RSS have many traits, thus a severe phenotype, while others have very few traits, thus a mild phenotype. → from the MAGIC Foundation's RSS page

I was an extremely ill baby. A lot of the medical problems I faced were linked to RSS, but I don't remember this on account of being, y'know, a baby. So, if you'd asked baby me for my opinion and if baby me were somehow able to answer and comprehend, I'd have said I had a severe phenotype. Now that I'm in my early twenties, I'm more inclined to say I have a mild phenotype – but as I'll explain, I'm no longer sure how true that is.

[Russell-Silver Syndrome in adults, basic disabled character guidelines, and resources below the cut]

Russell-Silver Syndrome in Adults (+ adult characters)

You can see in my childhood photographs the RSS-typical "triangular" face caused by a too-small jaw and large forehead, and slight facial asymmetry. I was chronically underweight until I got urgently referred to a dietician in like 2018, and my parents had an absolute nightmare of a time with feeding and making sure I ate enough when I was younger. I was still ordering toddler or child portions at restaurants well into into my early teen years because my appetite was so limited. I was also quite delayed in walking, speaking, and in development of motor skills, which are again typical of the condition.

Most of these traits don't affect me any more. The facial asymmetry and face shape are basically unnoticeable. I had surgery to remove four teeth, which fixed the overcrowding caused by the small jaw, and braces sorted out the rest. The dietician helped me learn how to make foods that were calorie-dense so I could get the nutrition I needed in smaller portions, and I'm now a good weight.m(The only part of the infant criteria that noticeably still affects my day-to-day life is the lack of appetite stuff, actually). I grew taller than the doctors expected me to, although I'm on the short-to-average end. I still have issues with balance and spatial awareness, but it's manageable. I've been in and out of physiotherapy and podiatry since I started walking. So, no, most of the RSS traits so common in infancy don't affect me now – but I'm still living with the condition, and it's taken a hell of a lot of treatment to get to where I am now. I honestly didn't realise how much until I started writing this answer!

Interestingly, the end of the MAGIC Foundation's RSS page has some information on RSS into adulthood, prefaced by this sentence: "Many people with Russell-Silver Syndrome (RSS) believe that once they reach their final adult height, their “RSS issues” are over." Other anecdotal evidence from other sources says the same thing. I would have once been inclined to agree, but my latest bout of reading up on RSS has taught me some interesting things. For example, there's overlap between autism and RSS! Or at least, according to the silverrussellsyndrome.org: "Some evidence indicates that there may be neurodevelopmental differences between the different genetic causes of SRS". Other sites state more explicitly that there's a link between RSS and Austism Spectrum Disorder, and research seems to still be ongoing, so ¯\_(ツ)_/¯

When I went to a chiropractor, he pointed out an issue with my jaw muscles and placement (? Couldn't quite hear what he said about that), and said this could be at least a partial cause for my chronic migraine. I explained about the RSS small jaw thing, and he nodded and said that made sense. Anecdotal evidence also now shows that many adults with RSS experience functional problems with muscles and their skeleton, including back pain – which sure goes a long way to explain the near-constant pain I get, as well as the fibromyalgia. Once again, research on this is ongoing.

There are also some health risks that adults with RSS are more likely to face. These include metabolic syndrome, hypertension, testicular cancer and gynaecological issues. It's stressed that not everyone with RSS will develop these; but some are more common and should be monitored for, as in the case of testicular cancer risk in RSS individuals whose testes didn't descend properly.

Your takeaway from this is that RSS in adult characters would be represented differently from the way it's described in children. Because the phenotype varies so much from person to person, my experiences are absolutely not universal. There may be people out there who've retained the asymmetry, for example, or those for whom the digestive/appetite issues are an even bigger problem. It would be so nice to see an adult character with RSS though, because it's not a condition that you outgrow – it's one where the condition seems to grow with you.

Things to remember when writing any disabled character

People are people: don't just think about the disability! We're more than that. Make sure your character has what any strong character should have (regardless of identity) – quirks, desires, motivation(s), some kind of conflict that affects the plot, their connection to other characters, etc.

Do your research: might feel slightly counter-intuitive to the first point, but it is important you know what you're writing about. I.e., does your character take medication or undergo treatment? Do they use accessibility aids of any kind? What accommodations do they need in day-to-day life? How does their disability impact said day-to-day life?

Reasonable limitations: it's okay to have a disabled character be, y'know, disabled. Sometimes they need help, or sometimes they'll need to assert boundaries or ask for accommodations. Sometimes they simply can't do something because they aren't able to. These are facts of a disabled existence. The crucial thing is to avoid framing the character consistently like a burden or a hindrance.

Inclusive worldbuilding: most relevant in SFF genres, but basically, if you're taking the time to do any degree of worldbuilding (be that a "real"-world urban fantasy environment or an entire invented continent with dragons), consider where disabled people fit in. Abled authors rarely, if ever, have to consider their place in the real world, so they rarely consider accommodations and accessibility features in their fantastical worlds. It's important to consider these things if you want to have well-rounded representation for disabled characters.

Listen to disabled voices: Ask disabled people, read/watch/listen to media created by disabled people, and remember that no one disability is a monolith. There may be a lot of nuance and debate within communities, but you can do your best by listening to the consensus and keeping an open-minded, good faith mindset.

This list ↑ is very much a TL;DR set of guidelines, but it's a good place to start. You'll find more information in the resources section below.

Resources:

In reference to your question, you might find my answer to this ask about including little-known conditions in fiction useful.

You'll find more discussions and guides in my disabled characters tag, my disabilities tag and my sensitivity & representation tag, as well as links to other resources.

The MAGIC Foundation – they have more in-site resources for RSS linked at the very bottom of the page

Silver Russell Syndrome Organisation – whole website dedicated to providing information about RSS

Diagnosis and Management of Silver–Russell Syndrome: First International Consensus Statement – This is a 2017 international consensus of research on RSS, condensed and simplified for general audiences. The original consensus is geared entirely towards medical professionals for treatment and research of the condition.

If anyone who has RSS wants to weigh in, please do!!

#russell-silver syndrome #silver-russell syndrome #disabled characters #writing advice #sensitivity & representation #disabilities #genetic disorders

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