Parry Romberg Syndrome & Keith Murty grandad of Alice & Mike Murty Manchester

Parry Romberg: Keith Murty & the face destroying Syndrome (PRS)

Peter Murty Dr Judy Murty Dr Sarah Hughes

Keith Murty & Parry Romberg Syndrome (PRS)

Sep 2021. Dr Judy Murty my much loved wife and mother of our children Dr Sarah Hughes & Peter Murty. Keith Murty grandad of twins Alice Murty & Mike Murty, family, Prestwich Manchester UK; & grandad of Sam Hughes, Woodbury Exeter UK, family, son of Dr Sarah Hughes, Exeter UK. Peter Murty head of technology, data platforms & father of the Murty Twins in Prestwich Manchester UK.

Dr Sarah Murty Hughes mother of Sam Hughes, Exeter UK. Keith Murty meetings and appointments with maxillofacial / plastic surgery consultants at Blackpool, Preston and Queen Elizabeth hospital in Birmingham.

Parry Romberg Syndrome (PRS) UPDATE

OCT 2021: After visiting 4 maxillofacial specialist consultants and feeling thoroughly despondent at their inability to help it seems that LUCK and GOD are on my side after all. I have been to see yet another maxillofacial consultant who took me completely by surprise when he explained what his plan of action was. There were no ifs or buts he just explained what he planned to do. I just have to keep everything crossed so that my immune syatem doesn't reject the implants he plans on using. Quite how a major surgery on my face is going to work out I just dont know, but it has to be done before disaster strikes. Even so it is truly heart warming news.

Keith Murty and maxilofacial consultants at Queen Elizabeth Hospital in Birmingham B15 2GW. I am of course very grateful to all the consultants I have seen for their time; great knowldge; understanding and also for referring me to the required specialist. Many thanks to them all especially at a time when Covid is causing so much trouble for everyone not just me and my particular problems. Many thanks and great respect goes out to them all.

Keith Murty grandad of twins Alice Murty & Mike Murty, family, Prestwich Manchester UK; & grandad of Sam Hughes, Woodbury Exeter UK; family, son of Adrian & Dr Sarah Murty Hughes, Exeter UK. Peter Murty head of technology, data platforms & father of Murty Twins in Manchester UK.

I suffer from Parry Romberg Syndrome (PRS) - Apr 2021:

It is because PRS has DESTROYED my face that there are so few photographs of me, Keith Murty, on the www!

Parry-Romberg Syndrome is a rare, acquired disorder characterized by slowly progressive shrinkage (atrophy) of the skin and soft tissues of half of the face (hemifacial atrophy). In rare cases, both sides of the face are affected. In some people, atrophy may also affect the limbs, usually on the same side of the body as the facial atrophy. The severity and specific symptoms of Parry-Romberg syndrome are highly variable from one person to another. Additional symptoms can potentially develop in some people including neurological abnormalities or abnormalities affecting the eyes or teeth.

Parry-Romberg syndrome usually becomes apparent during the first decade of life or early during the second decade but does occur in adulthood. Most individuals with Parry-Romberg syndrome experience symptoms before the age of 20 years. The exact cause of Parry-Romberg syndrome is unknown and appears to occur randomly for unknown reasons.

The full medical descriptions, symptoms, development and treatments are all here:

https://rarediseases.org/rare-diseases/parry-romberg-syndrome/

or here:

https://www.craniofacial.net/before-after-parry-romberg-sequence-dallas/

or here:

https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/parry-romburg-syndrome/

I first noticed a problem with my left ear in 1960 at the age of 10 - yes 60 years ago! By 18 atrophy was just starting to show on the left side of my face, I was accepted into pilot training at the age of 16 and by the time I was 21 they wanted to carry out a plastic surgery procedure, but I was in the middle of pilot training so I put it off for a short time. That turned into 50 years - oh dear! After 50 years PRS had progressed significantly and my face is quite a mess these days. I approached my GP in 2020 for guidance and she referred me to a Consultant in Victoria Hospital and things moved on from there (5 consultants later). I have finally been referred to a plastic surgeon who I hope may be able to help me with some sort of facial reconstruction. My hopes have been dashed by having already been told that there is a marked reluctance to do any hard tissue reconstruction (bones & cartilage); and soft tissue reconstruction (fatty tissue implant) is only a temporary solution – 4 to 6 months before it needs redoing and redoing and..........! So that has left me wondering if there is any solution at all. So my next appointment will be on 20 October 2021 but that needs confirming. Then there are all the difficulties that Covid has for anyone in need of medical help. I do wonder now if there is any hope at all! That's not good; not good at all.

So I am still running around the country trying to get help from somewhere but it is proving surprisingly difficult (bearing in mind the problems that everyone faces because of Covid19). My daughter's husband is a trauma / orthopeadic consultant. Ha! you say - problem solved, easy access to medical help. But sadly not so. My daughters reply is "2 fingers". How sad can anything get. Help is available but my daughter refuses to allow it. What a horrible child!

Keith Murty for my children: Peter Murty & Sarah Hughes & family. Keith Murty grandparent & grandad of Sam Hughes, family, Exeter UK. Keith Murty grandad of twins Alice Murty & Mike Murty, family, Manchester UK.

Peter Roy Murty Dr Judy Murty Dr Sarah Murty Hughes

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Thanks grandad Keith Murty.

Thanks as grandad of Sam Hughes, Woodbury Exeter UK; and grandad of Alice & Mike Murty; family; Prestwich Manchester UK.

Twins Alice & Mike Murty, Prestwich Manchester. Father Peter Murty

Twins Alice & Mike Murty, Prestwich Manchester; grandad Keith Murty. Family & grandad of twins Mike Murty & Alice Murty children of Jen Murty & Peter Murty, Prestwich Manchester in 2021.