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!

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.

Mike is a retired Police Inspector from Lincolnshire. Having completed his thirty years service he retired in 2017.  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 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 of 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 2023 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.

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.

After living in New York City for 30yrs, Laurence returned to France where she was born and currently lives in Brittany with her husband. She taught French, language and literature, at Smith College, NYU and at Professional Children’s School in NYC. Before moving to Brittany, she lived in Paris where she worked for the Columbia University’s Paris annex as coordinator of studies, acting as liaison between the French university system and US professors and undergrads. She retired after 12 years in 2016.

She was diagnosed with pemphigus vulgaris during the year prior to her retirement. The doctor who diagnosed her offered her the opportunity to enter in a clinical trial called Pemphix, evaluating rituximab vs cellcept as a first-line treatment – she didn’t hesitate. The treatment was a success, and she has been blister free ever since. Her doctor also told her about the PEM French patient organization, the APPF (Association Pemphigus Pemphigoïde France). Benefitting from the APPF’s support and advocacy, she wanted to help provide these invaluable services to others. She began using her knowledge of English to translate documents and brochures, and was soon going to English speaking congresses, meeting with other PEM patient organizations, acting as a liaison with these in other countries.

Her involvement with the IPPF started when Marc Yale invited her to its scientific congress in Lubeck in 2017. That same year, she became the APPF representative to the IADPO – Global Skin and the European Reference Networks (ERNs). In the ERN SKIN network, she’s been the European Patient Advocacy Group (e-PAG) representative for the PEM groups since 2018. It was also in 2018, at the EADV Congress that she met with Isobel Davies from PEM Friends. In June 2019, she met other PEM Friends members, Trina and Sharon, at the Milan Global Skin Conference. In 2021, she was invited to join the IPPF Board of Directors. In 2022, she resigned from the APPF Board but remains a member and, in the summer of 2022, she joined PEM Friends and sits on the Council.

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.

Now semi-retired, she does the bookkeeping for a local preschool & enjoys more family time. Kath was diagnosed with Bullous Pemphigoid (BP) in January 2023. The rash & blisters started in December 2022 at the same time as she caught covid. Thankfully with persistence she was referred to  dermatology at Clatterbridge Hospital within a month. The wonderful dermatologist recognised the disease immediately and confirmed the diagnosis with a biopsy the very next day. The BP is now under control with steroids and creams, but Kath is longing for the ‘remission’ everyone talks about! Kath joined the PEM Council in May 2024 and hopes her skills will be of benefit to PEM Friends; she is so grateful for their invaluable knowledge, kindness and support. Kath is particularly interested in establishing a regional hub, possibly to cover Merseyside and North Wales, for PEM Friends to informally meet in person locally.

Kath has had a happy & busy working life, spanning the banking industry, Retail Office Management & then Service Management for an international telecoms company.

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.

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.