“Two-Faced”: Living with Parry-Romberg Syndrome…

…and ‘Why hide human specimens from all humans?’

A misconception I’ve frequently encountered is that working within medicine or pathology somehow takes me out of the sphere of ‘normal’ society, and places me in a position whereby I can’t relate to illness or death in a human way (and therefore shouldn’t have an opinion). For example, when I held the Eat Your Heart Out anatomical cake event at Barts Pathology Museum, a few years ago, we did receive one or two complaints despite it being hugely well received. (See my Pinterest board for more amazing images.) Many of the successful bakes included syphilis cupcakes (used to teach children about the dangers of unprotected sex) and melanoma cakes (to warn of this highly malignant cancer) but the line was drawn at my idea for an HPV (human papillomavirus) cake pop and a donut showing the levels of Cervical Intraepithelial Neoplasia (CIN Levels 1, 2 and 3) which lead to cervical cancer.

Melanoma and STD cakes
Melanoma and STD cakes

You can see from the pictures below the illustrations of these conditions lend themselves wonderfully to baked goods, but the consensus was that they may be too offensive. “Offensive to whom?” I’d queried of the steering group and was given the reply “Well, the people who’ve suffered them, of course.” Well it subsequently surprised people to know that I had suffered these conditions and I underwent a lot of treatment for them, like many other women my age. But I wasn’t offended – it was for that very reason I wanted to draw more attention to this disease which can be treated easily if caught in time. If adverts on the Underground aren’t getting the message across, why not try cake? I’d believe ANY message if it were conveyed to me in cake!

CINHPV

Similarly there are many of us who champion the continued use of medical specimens for teaching, formally and informally, including the more contentious foetal specimens (and in fact I’m involved in a research project about this very topic.) When faced with opposition from detractors one of the reasons we’re told to hide those particular pots is that baby specimens are offensive to those members of the public who may have suffered a miscarriage or lost a child, and may bring back bad memories. It so happens that around 50% of the people who work in pathology, medicine, the police and the funeral industry are women. (Shocking, I know, but it’s not the 1950s). Women work in these industries and they too have suffered miscarriages and difficult pregnancies yet they carry out postmortems on babies, embalm babies, investigate their deaths and use their remains for teaching – they are not exempt from personal disaster or the subsequent bad memories but they understand the need for investigation and education for progress.

half-face

So what’s my problem?

For the above reasons, I’ve chosen to write about something which perhaps, in more than one way, makes me ‘two-faced’. I have my mortician and pathology educator mask on at work, but that isn’t my only mask – I am still human and therefore have my own health issues. Something I’ve suffered with since my teens is Parry-Romberg Syndrome, an extremely rare neurocutaneous condition which causes atrophy to the facial tissues. Many people who know me will see, every couple of years or so on social media, that I’m ‘off having surgery again’ and I’ve never really explained why – even to my closest friends. It always seems like something I shouldn’t moan about because it’s not life threatening anymore so I just get on with things and try to ignore it. But I think perhaps I shouldn’t now, in order to illustrate the above points.

Half2
Wish I could credit this pic – it’s from Pinterest. Also wish I could look like this!

This condition has an unknown aetiology but one of the theories is that it is caused by trauma. I was attacked on a night out in my teens; actually held down by two of the perpetrator’s friends while I was punched in the face, and after the usual facial damage (black eyes, broken bones) healed, all seemed well. But gradually over the course of a couple of years I started to notice slight differences in my facial structure until eventually I felt I was staring at a stranger in the mirror and I knew something was wrong. Not only that but I suffered severe migraines, had a couple of TIA’s (Transient Ischaemic Attacks or ‘mini-strokes’) and became practically blind in one eye. The rest is history.

I’m lucky I have a very, very mild case of this hemi-facial atrophy and it has gone into remission now that I’m an adult. I’m also lucky I have a wonderful surgeon who diagnosed me years ago and eliminated all the really serious symptoms I could have continued suffering from by having me scanned, x-rayed, jabbed, medicated and more until he was certain I was in remission. Then I began having superficial reconstructive surgery and have undergone this every year or so for the last 8 years while having frequent check-ups and taking medication. I write this post while recovering from the most recent session in which some adipose tissue was removed from my abdomen (belly fat) and injected into my face to give a more symmetrical appearance. He really doesn’t remove much fat (about 8 ml) and I keep asking why he won’t offer a 2-4-1 deal and do some lipo at the same time…? It could be a good sideline! Previously I’ve had fascia removed from both my legs and implanted into my face, as well as temporal tissue from my head, and soon it may be cadaver skin (Alloderm). I actually AM like the Bride of Frankenstein….and I’m ok with that. I’ve even considered getting stitches tattooed on me 🙂

Bride

Even though my speech is like The Elephant Man’s at the moment and I look like I’ve been in the ring with Mike Tyson (and will do for a while as my face heals) I’m generally ok. But I’m in pain, and I’m off work, and I can’t see my family & friends, and I wonder what it’s all for? Is the pain worth it? Does it really matter so much if my face is a bit different? Am I being vain? Or is it that our faces are ourselves – seeing our own reflection is like being with an old friend, and it can be disconcerting to see someone else in their place. I’ll be symmetrical for a year or so but then that stranger will begin to appear in the mirror and the surgery process may have to start again… I suppose it’s not a nice position to be in but it’s certainly not the end of the world. If this is the only reason I have to undergo surgery in my life then really I’m just thankful – it could be something so much more life-threatening.

Bride. Of. Frankenstein...
BEFORE: Bride. Of. Frankenstein.
Profile Pic 2
AFTER: Not too shabby – I shouldn’t complain!!

One thing this (as well as my work as an autopsy technician and pathology curator) has given me is an appreciation of the exquisite yet terrifying fragility of the human body. Our tissues are subject to interference from chemicals, trauma, nerve irregularities and more; it takes no force to cut through the ribs of a young adult, barely any strength to stamp on the skull of an individual and cause it to fragment like a boiled egg; hardly any effort to snuff out life whether adult or child. Surgery and medicine have advanced leaps and bounds – I’ve witnessed this first hand over the last 8 years – and miracles can be carried out. But so can cruelty and savagery. It’s better to think about the former than the latter.

fragile
Lisa Nilsson paper quilling

Why then is it so wrong to want everyone to see this delicacy and intricacy first-hand by viewing anatomical preparations? Why should the amazing advancements achieved by medical pioneers, and evidenced in anatomical museums, be somehow ‘hushed up’ only for certain demographics of people to witness? Is any member of the public really offended? If so, why? (I’m referring in particular to the fact that in the UK, human tissue specimens can not be seen by the general public unless they are over 100 years old, according to the HTA. Only those training for or currently in a medical career can view younger specimens and the only exception is when the premises purchase a yearly ‘Public Display Licence’. This is what we are working towards at Barts Pathology Museum at the moment and is the reason only the ground floor is currently open at public events). Of course we may not all become doctors but we most certainly will all become patients at one point or another.

I wrote this post to illustrate that doctors, pathologists, morticians, whoever, are not exempt from mortality issues and they do not live outwith society. They suffer the same fears for their health, the same possibility of disease, the same capacity for loss and pain as everybody else and on top of that they bear witness to it every working day. So they simply try to make their peace with it, educate as many people as possible about the avoidable problems and bear the unavoidable ones with quiet humour, intellectual discussion and introspection.

At the risk of sounding like Hugo Weaving in the Matrix, there’s nothing wrong with writing about, discussing or seeing death when, for absolutely all of us, it’s inevitable.

 

 

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32 thoughts on ““Two-Faced”: Living with Parry-Romberg Syndrome…

      1. looks like i have what you have…p r s i have been dealing with it for over 2 decades now not knowing what it is and today my ex in the time it took for me to have a surf session at my favorite spot hit me back on fb and showed me a link to prs….it deffinately is what i have

    1. Hi. Great article. Thank you.
      I also have Parry Romberg Syndrome for the last 27 years. Really would like to talk more with someone who has same diagnosis but with different features/symptoms.
      🙂
      Hope you still come see this page as I know it was typed in 2014. 😊
      X

      1. Hi!!!! Sorry. Didn’t saw it as checking on my phone and couldn’t open a few links. I’ll read it 🙂
        I finished my surgeries 6 or 7 years ago as they felt there was not much left to do. Speak to you soon. X

  1. Great article. Really interesting to ponder the feelings of the ‘subject’ for whom the condition is a part of life. I once had a guy come up to me and tell me that a painting I’d done of intestines was the right texture, but not the right colour. He’d seen his when in a car accident and the picture had taken him right back to the moment. I was mortified that he’d think I was treating the anatomy as blithely or flippantly, when for him it had serious significance. He was mainly keen that I got the right kind of pink.

  2. I just read this beautiful post, and I feel both angry at what happened and in awe of your strength and outlook in life….you really are an inspiration, Carla! I’ve been to see the Museum and to see you talk, and really enjoyed it as I always enjoy your emails and blogs…
    I really admire your passion, creativity and inventive (and feminist philosophy!). And you are beautiful!
    Keep up the good work.

    Margy

  3. Very, very interesting post, and so kind and commendable of you to share your story.
    I was at Bart’s a year ago (“Pharmacology, My Dear Watson”), and I longingly kept updated ever since, as I live abroad. As soon as I’m back in London, I hope to be able to participate to a few more awesome events. Just to let you know you all made quite an impression — and I, oh, so thoroughly enjoy “The chick and the dead”.

    So, keep up the good (and wonderfully thought-outside-the-box) work.
    I wish I’ll partake in it again ASAP 🙂

    Cheers, and best wishes for a speedy recovery!

  4. Very, very interesting post, and so kind and commendable of you to share your story.
    I was at Bart’s a year ago (“Pharmacology, My Dear Watson”), and I longingly kept updated ever since, as I live abroad. As soon as I’m back in London, I hope to be able to participate to a few more awesome events. Just to let you know you all made quite an impression — and I, oh, so thoroughly enjoy “The chick and the dead”.

    So, keep up the good (and wonderfully thought-outside-the-box) work.
    I wish I’ll partake in it again ASAP 🙂

    Cheers, and best wishes for a speedy recovery!

  5. What a beautifully written article. Really brings home.
    You say that your unable to see family and friends during your healing process.
    I’d just like to say. These are the people that love & care for you unconditionally. No matter how you look. We all see you as the same amazingly beautiful individual that you are and always will do.
    Here’s to a speedy and restful recuperation.
    Big Huggywuggy kido 🙂 x

  6. I cried reading this. You are an amazing and strong person. You never let anything stop you. You are creative and beautiful both outside and in. You are an inspiration. You would never know you had been through such traumas as they have never got in your way.

  7. thank you so much this was a fantastic post, truly enlightening. I look forward to attending an event and maybe a little cake 😘 very best wishes

  8. thank you for writing this post. I had to have severe reconstructive surgery on my face when at university and after the various operations, and after each my face was severely bruised and swollen. I had to get on with it, go back to my studies and my life at university. The swelling on my face took 2 years to go down, I looked very different and life went on but it did affect me – your face is your gateway if you like and having anything done to it does affect you. I have no regrets about the surgery but I never realised how much surgery on my face would affect me. I am very lucky in that all my operations were done through cutting me open through my mouth so I too have no external scars, so you wouldn’t know what I have been through, but there are so many people out there who face things people don’t know about. I think it’s important that people do talk about everything so thank you for posting.

  9. A great blog post Carla, I know we have talked about this before but your writing is always a pleasure to read! What a brilliant insight on your condition. Definitely see you at your re-scheduled lecture and hope you get time to rest up and watch lots of Murder She Wrote and other Hallowe’en treats between now and then xx

  10. Thank you for sharing this. I agree, cakes are a great way of raising awareness of harmful conditions! I myself have suffered a number of health problems this year which make you aware of your own mortality, fragileness and the true meaning of pain. My research involves the scent of death and decomposition and I am appreciative and have utmost respect to those who donate their bodies to science. Some people, I believe, would want to live on and be appreciated by those who view their remains- whether for anatomy, taphonomy or even art. The HTA needs to be updated to accommodate for such people in the UK. Many people would benefit from it. I hope to visit Barts in the near future. Best wishes!

  11. When I clicked on the post I was half-thinking of Corpse Paint as in the Black Metal face painting, but this post was so rewarding. I never knew this condition existed.
    I recently saw my first potted & deformed foetuses when a friend who studies medicine took me to see the specimen room at her university. She herself thinks it’s exploitative and sensationalist to keep the foetuses with rare conditions on display, but thinks that having healthy bodies to study anatomy is important.
    I don’t really know how to search your blog, but have you ever written about the Body Worlds exhibitions?

    1. Hi, Many thanks for your comments! I haven’t written about body worlds simply because it was all a bit more relevant a lot longer ago than when I began this blog. Plastination itself is a valid procedure for tissue fixation because it means that, in a way, students can ‘handle’ anatomy up close. However, what Von Hagens does with his is less anatomy and education and more the sort of ‘spectacular’ objectification we’re trying to get away from . It doesn’t help that he makes an awful lot of money selling parts of people as paperweights etc – there’s something unsavoury about it. I have seen it and as an anatomy tech I did enjoy it but it’s all just a bit ‘dodgy’ to use a technical term!

  12. I wonder if the problem isn’t that those affected by the conditions are upset or offended by such exhibits, but that because society tells us we should find them taboo, bystanders have an irrational fear of the taboo thing being made accessible?
    It strikes me as a need to control what society allows us to see, disguised as a desire to “protect” the “vulnerable”. The only ones being protected are those who place so much significance on maintaining control over what knowledge is and isn’t deemed suitable for the general public.

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