The PEM Council

Trina has been married to Simon for 34 years. They have four children, all but one are married. And we have just been blessed with our 1st grandchild! I am a Christian and worship at Thornton Heath Evangelical Church. I also work part time in the church office.

I was diagnosed with Pemphigus Vulgaris in January 2015 after a long journey of misdiagnosis for a few years. Doctors thought it was tonsillitis, epiglotitus, throat cancer before finally doing a biopsy! I appeared on an episode of "24 hrs in A&E" (Season 28, Episode 2, 'A load to carry').

My role as a PEM Council member is being part of an amazing team to deliver support to the patient group PEM Friends. I am the Chair and the "PEM Lives" magazine editor. I also use my graphic design skills to create all our posters, leaflets and social media graphics. I particularly enjoy attending conferences, especially GlobalSkin. Attending this enables me to represent PEM Friends as a 'patient voice'. Hearing keynote speakers, participating in workshops and contributing to group discussions in RareDerm forums, helps us gain exposure to new trials and treatments. Regardless of how experienced anyone is, we can always learn something new at Patient Support Group conferences. I also feel that attending conferences is valuable because it enables me to 'network', mostly during the break sessions!

My hobbies are learning the piano (not doing very at the moment) and acrilic painting. I have recently joined the Croydon Soul Symphony Choir, singing soprano. I've performed in a few concerts and really enjoy singing!

I am an outgoing people person and feel passionately, no matter what, that everyone is important and everyone needs to be heard. We are certainly not alone with PEM Friends!

Isobel devoted her working career to supporting the development of organisations, teams, and individuals. She spent many years as an International HR Director for renowned multinational corporations before setting up her own company, In Partnership. As an independent consultant, Isobel provided organisational development and coaching to organisations and people in the UK and beyond from a variety of sectors – private, public, government and voluntary.

Isobel managed a successful career whilst struggling with the effects of mucous membrane pemphigoid, which she managed to accommodate despite its debilitating effects. She educated herself about the consequences and treatments for MMP and, as a result, found her way to the door of PEM Friends, right at its inception in 2000.

Isobel was invited to take on the leadership of PEM Friends in 2015. After 9 years at the helm she stepped back from being Chair but remains firmly committed to PEM Friends as a trustee. Isobel has a passion for helping others diagnosed with these autoimmune blistering diseases to find support and help and works diligently to raise awareness and knowledge amongst all of those who experience it in whatever capacity.

Mike is a retired Police Inspector from Lincolnshire Having completed his thirty years service he retired seven years ago.  During his career, which he thoroughly enjoyed, he was fortunate to have experienced many different roles, ending his career as a Neighbourhood Policing Inspector at Stamford. Mike is a keen sportsman, his main passion being tennis. He started playing tennis aged fifteen and played County tennis, from the age of twenty-one. Mike played for the British Police and competed in the European Police Championships in France, in his early 30’s. Shortly after this he was badly assaulted at work, and almost lost the little finger on his right hand. Mike was fortunate as a specialist consultant was visiting his local hospital and his finger was saved which enabled Mike to continue his tennis. After his retirement from the Police, Mike became a tennis coach at his local club. In 2005 he met his wife Sue and her two sons Dom and Henry then aged 9 and 6, which changed his life dramatically and for the better! The two boys shared Mike’s passion for tennis and developed into nationally ranked players of 2 & 7, at their best.

In February 2022, Mike was diagnosed with MMP. Initially, he was able to continue playing and coaching tennis, and he was delighted to be selected for the Wales over 60’s team, which won the Home Nations Internationals in May of 2022. Despite being extremely fit for his age Mike found he was unable to continue competing and coaching due to the fatigue caused by the MMP and in early 2023 had to retire from both. Fortunately, he is still able to regularly play his ‘second’ sport golf, as it is less demanding on the body. Since then, Mike has concentrated on trying to control his MMP, especially issues with his eyes and is he is indebted to two specialists Dr Saw and Dr Jurge who have helped him enormously with their wealth of knowledge and commitment to him.

Mike was extremely fortunate as he had a diagnosis three months after symptoms appeared. He had a Rituximab infusion in December 2024 which has currently alleviated his fatigue and his  MMP appears to be in remission;( fingers crossed)!

Mike has a six hour round trip journey to London for specialist treatment which can be exhausting in itself. As a result, Mike’s aim is to try and ensure there are Regional centres of excellence to treat the various different types of pemphigoid and pemphigus.

Hugh joined the Council in April 2024. He is married to Georgie and they have two daughters, both now in their mid to late 20’s.

He was finally diagnosed with Pemfigus Foliaceous (PF) in January 2022 having spent nearly two years from the age of 60 of gradual worsening of blistering. However, even the specialist dermatologist who recognised the symptoms had never treated a PF patient before.

Although nearly 6 months of strong topical steroid ointment reduced the PF, strenuous exercise triggered another attack leading to the realisation that this rare condition would not easily be beaten and fellow sufferers would most likely be able to offer the support and guidance required in dealing with it.

It did not take long to find PEM Friends on the internet. Within just a few weeks of  making contact, he was being cared for by the dermatology team at Guys Hospital thanks to the recommendation of PEM Friends.

This has enabled him to carry on working full time as a solicitor in London and, in his spare time, to give a little back to the organisation which helped him through a difficult period.

John is a qualified accountant from Liverpool but now living near Macclesfield. He is married to Sue and has 3 children and 4 grandchildren, all living within 5 miles.

After a long corporate career and setting up his own business, which he subsequently sold, he retired in 2002. Amongst other interests, he became treasurer at Stockport Mind for 15 years and this knowledge of charity accounts should prove useful now that PEM Friends is a registered charity.

John was diagnosed with Bullous Pemphigoid in October 2022, which steroids have controlled. He is on a reducing regime (fingers crossed) and has learned to live with the itching!

Umber has Pemphigus Vulgaris (PV). Her symptoms began in July 2017 but the condition was not diagnosed till late 2018, by a physician outside the UK.

Umber has worked as a journalist in both the UK and Pakistan. She was a producer and broadcaster at the BBC World Service in London for 17 years but took early retirement in 2018 following health problems. She is a columnist, freelance writer and editor, a regular columnist and a graduate of Princeton University.

My name is Hazel. I am married to my husband Ian, and together we have two sons, Greig and Scott. Greig lives in New Zealand, while Ian, Scott and I live in Scotland. Family has always been at the heart of who I am, shaping both my personal values and my professional life.

I trained and worked as a registered nurse, remaining on the register from 1980 until 2025. Nursing was not just a career for me but a vocation, grounded in compassion, advocacy and a strong belief in high-quality, person-centred care. In 2002, I joined the Scottish Care Regulator, now known as the Care Inspectorate, where I spent the next 20 years of my working life. I took early retirement in 2022, proud of the contribution I had made to improving care standards and supporting vulnerable people.

In the summer of 2023, my professional experience became deeply personal. After several months of significant pain & suffering my son Scott was diagnosed with Pemphigus Vulgaris (PV).

In the beginning, both Scott and I felt frightened, isolated and poorly informed. It was at this point we found PEM Friends. Their compassion and community made a profound difference at one of the most difficult times in our lives.

Having met Trina, the Chair of the PEM Friends Council, at the British Association of Dermatologists (BAD) conference in July 2025 she invited me to join as a council member, which I happily accepted.

I am proud to “fly the flag for Scotland” and to contribute to a community that offers hope, connection and support when it is needed most.

Julie is our resident American, having grown up in California and moving to the UK in the 1980s where she became a professional archaeologist and earned an MSc in Forensic Archaeology and Anthropology. She travelled the country taking part in innumerable excavations in advance of developments, then settled in Kent where she ran excavations until her semi-retirement in 2023. History and archaeology are her passions, which extends into her favourite hobby, taking part in historical re-enactment and living history spanning the British Iron Age to the American West.

Julie celebrated her 50th birthday receiving her diagnosis of Pemphigus Vulgaris. Thankfully her GP’s initial concern resulted in an immediate referral to the Maxillo-Facial Unit at Kent and Canterbury hospital where she was seen by a clinician who recognised the ulcers in her mouth as PV. Two biopsies later confirmed the visual diagnosis, and having been referred to the hospital’s Dermatology Department, she started on her PEM journey accompanied by her ever-present journal which mapped her life with PEM. Ten years later, on her 60th birthday Julie took her last tablet of the immunosuppressant Azathioprine, and thankfully has been in complete remission ever since.

Julie joined PEM Friends on Facebook in its infancy and is now the main administrator for the popular PEM Friends private Facebook group which has over 675 UK-based members in addition to the public Facebook page. In 2023 she took part in the charity Beacon for Rare Disease’s annual Mentoring Programme, and thanks to a grant from the British Association for Dermatologists (BAD) she commissioned the production of a run of 50 logoed journals for members of PEM Friends to take to their medical appointments to record their PEM journeys. The importance of patients recording living with a rare disease is Julie’s raison d’etre both in PEM Friends and in the wider rare disease community.

Kalpesh works as an IT Project Manager, is married to Jagruti, and has 2 children – daughter and son, who are both currently at university.

Kalpesh was diagnosed with Pemphigus Vulgaris at 32 years old in October 2004, just two days after the birth of his son. His diagnosis took 6 months during which he lost 20kg in weight. Luckily, Dr Karen Harman diagnosed his condition – she is one of the top PV specialists in the UK. Kalpesh took part in the clinical trial of a potential new medicine for Pemphigus Vulgaris in 2021.

He has been involved with PEM Friends since 2004, when the group was run by PEM Friends founder Carolyn Blain. He assumed the role of Treasurer in 2018.

Kalpesh is Hindu by religion and does voluntary work at his local temple in Chigwell. He recently went to Abu Dhabi to help with the opening of First Hindu Temple. He has also helped to build Temples in India and UK since 1994.

Ingrid originally grew up in the south of England but moved to Leicester in the late 1970s when she went to study Geology at Leicester University. She met her husband there and has lived in Leicester ever since.

She eventually started working for Leicester Libraries as a library assistant and she then spent several years working on the library digital management system. Afterwards she became a senior assistant looking after two community libraries.

In 2015, at a relatively young age for this type of PEM, she developed Bullous Pemphigoid. The disease was very severe but fortunately she discovered the group PEM Friends which helped her enormously as she had never heard of Pemphigoid and Pemphigus. For various pemphigoid related reasons she took early retirement from her library job.

Ingrid became more involved with PEM Friends and when Covid-19 struck she decided to launch a more comprehensive website as she thought that more information was needed and many PEM sufferers were isolated due to immunosuppression.

Ingrid is also involved with several studies and research projects for Bullous Pemphigoid and is passionate about raising awareness for the disease. She firmly believes that earlier diagnosis would result in less severe medication and the consequences which follow from this.