2022 International Symposium – EDS & HSD Untangled

Watch the Presentations from EDS & HSD Untangled: Ask the Experts

Gastrointestinal Complications in EDS & HSD – Prof. Qasim Aziz and Gabrielle Foster

Professor Qasim Aziz is Professor of Neurogastroenterology and director of the Wingate Institute of Neurogastroenterology.  

Professor Aziz’s research contributed to the identification of the brain representation of human swallowing muscles and has helped to identify the human brain centers that process gastrointestinal pain and their modulation by injury and stress. His research has explored neurophysiological aspects and treatment of chronic GI conditions. He has performed pioneering research exploring the link between Ehlers-Danlos syndrome and GI symptoms.  

Professor Aziz was awarded the Sir Francis Avery Jones Research Gold Medal by the British Society of Gastroenterology in 1998 and the Janssen Award for Basic and Clinical Research by the American Gastroenterology Association in 2000. He is the president of the European Society of Neurogastroenterology and Motility 

I’m a 20-year-old medical student at Newcastle University, originally from Liverpool. Growing up, I loved to dance and from a young age, I participated in countless competitions and shows. As I became unwell, this proved more difficult, but I still hope to dance again one day! In my spare time, I tutor GCSE and A-level students and enjoy socialising with my friends and family.From age 14, having abdominal pain and dysfunction became the new normal for me, but it wasn’t until 4 years later that I was diagnosed with hEDS. At age 19, I had an ileostomy formed as a long-term solution to my paralytic ileus. While EDS primarily affects my GI tract, joint subluxations, POTS and MCAS also affect me day-to-day. I’m currently waiting on the results of an EDS gene panel, for suspected clEDS.

Pain – Dr. Helen Cohen and Anoushe Hussain

Dr. Helen Cohen is a Consultant in Rheumatology and Chronic Pain at the Royal National Orthopaedic Hospital, Stanmore, UK.  Dr. Cohen graduated from the University of Wales College of Medicine, and completed her Ph.D. at the Royal National Hospital for Rheumatic Diseases, Bath supported by an Arthritis Research UK Clinical Fellowship.  She has a special interest in the management and treatment of chronic pain, and specifically in joint hypermobility / Ehlers-Danlos syndromes(EDS), and Complex Regional Pain Syndrome (CRPS). She leads the CRPS and hypermobility rehabilitation programmes at Stanmore, working closely with orthopaedic colleagues and allied health professionals.  

One of Dr Cohen’s main research interests is in understanding how brain mechanisms contribute to pain. Her clinical interests include hypermobility, fibromyalgia and CRPS among other chronic, difficult-to-explain pain syndromes.  She is a keen hiker/mountaineer and martial arts enthusiast. 

Anoushé is a champion for all those experiencing barriers and self-limiting beliefs.
Born missing her right arm below the elbow, living with multiple health conditions, a cancer survivor, a Muslim and coming from an ethnic minority, Anoushé has never let what society or culture thinks she should do limit her or dictate the direction of her life. She is constantly breaking the mould and challenging not only her own beliefs about her own potential but also that of society and her own culture.
She has become a role model to anyone facing a self-limiting belief or barrier and is sharing her journey to help others unlock their potential. Anoushé candidly talks about her life, including becoming a new ambulant wheelchair-user, how she has remained resilient in the face of huge obstacles and talks about issues that we as a society do not talk about enough. In particular, Anoushé highlights the plight of those stigmatised by society in order to change the misconceptions around these groups. She is heavily driven by teaching others learn to shed their self-limiting beliefs and help empower them to reach their potential.A civil servant by day, Anoushé is a paraclimber in the UK and an ambassador for both Ehlers-Danlos Support UK and Limbpower, the leading charity for amputees and those with limb difference. She also co-founded and run Paraclimbing London and competes as an international paraclimber
Anoushé has won multiple awards including being in the 2019 Powerlist and is also a Guinness World Record Title holder.

Neurodiversity & Mental Health – Dr. Chad Shepherd and Julie Hill

Dr. Chad Shepherd is a Clinical Psychologist, part of the Psychology Team within the London Hypermobility Network. He has special interest working with HSD (Hypermobility Spectrum Disorder)/hEDS (hypermobility Ehlers-Danlos Syndrome). He works both face-to-face and online with adults and children helping them address chronic pain, fatigue, poor sleep, physical health problems, chronic stress, anxiety, low mood, trauma and low self-esteem. He draws upon a wide range of therapies including Cognitive Behavioural Therapy (CBT), (Acceptance & Commitment Therapy (ACT), Compassion-Focused Therapy (CFT), and Eye Movement Desensitization Reprocessing (EMDR).

Dr Helen Cohen is a Consultant in Rheumatology and Chronic Pain at the Royal National Orthopaedic Hospital, Stanmore, UK.  Dr Cohen graduated from the University of Wales College of Medicine, and completed her PhD at the Royal National Hospital for Rheumatic Diseases, Bath supported by an Arthritis Research UK Clinical Fellowship.  She has a special interest in the management and treatment of chronic pain, and specifically in joint hypermobility / Ehlers-Danlos syndromes (EDS), and Complex Regional Pain Syndrome (CRPS). She leads the CRPS and hypermobility rehabilitation programmes at Stanmore, working closely with orthopaedic colleagues and allied health professionals.  

One of Dr Cohen’s main research interests is in understanding how brain mechanisms contribute to pain. Her clinical interests include hypermobility, fibromyalgia and CRPS among other chronic, difficult-to-explain pain syndromes.  She is a keen hiker/mountaineer and martial arts enthusiast. 

Autonomic & Mast Cell – Dr. Alan Hakim and Caitlin Colvin

I am a Rheumatologist based in London, UK. Graduating from Cambridge University, I trained at Addenbrooke’s, Cambridge, and UCLH, London, and was a Clinical Fellow at St Thomas’ Hospital, and Senior Lecturer at Bart’s Health, London. I am a Fellow of the Royal College of Physicians, UK; Assoc. Prof. in Medicine, Penn State, USA; and an Hon. Consultant at UCLH.  Experienced in hospital Director, Executive and Commissioning Board leadership, I have a breadth of skills in project management and health care delivery.   

With over 100 papers in Rheumatology and Medical Education, I am an experienced clinical academic, and have been guest editor at the Am J Med Genet and edited 6 books. I work closely with the Ehlers-Danlos Society and International Consortium (IC) on Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders, am the Dir. of Registry & Education and member of the Medical & Scientific Board at the Society and sit on the IC Steering Committee as the hEDS/HSD Group Chair. 

I am a freelance writer and editor who can thankfully work from home. I was diagnosed with hEDS in 2021 after more than a decade of symptoms that did not make sense. My biggest pastime is writing fantasy novels. I enjoy video games, listening to music, and staring up at the stars. I live in California with my family, half of which are cats.

Pregnancy – Dr. Sally Pezaro, Dr. Jess Bowen, and Clare Hitch

Dr. Sally Pezaro is a registered Midwife, an adjunct Associate Professor at the university of Notre Dame in Australia, an Assistant Professor at Coventry University, a Fellow of the Royal College of Midwives (FRCM), and an editorial board member of Evidence Based Midwifery, MIDIRS and the International Journal of Childbirth. She is also a panelist on the Nursing and Midwifery Council’s fitness to practise Investigating Committee, a Senior Fellow of the Higher Education Academy (SFHEA), an Invited member of the The Ehlers-Danlos Society’s International Consortium, Midwifery Champion for the Nursing Now challenge and the lead midwife for www.hEDSTogether.com. Sally has clinical midwifery experience working in the United Kingdom, the Gambia and Ethiopia. Reflecting on her own experiences, Dr Pezaro ensures that her work, now in research and academia remains challenge led.

Jessica Bowen is a UK registered genetic counsellor and has worked in clinical genetics since 2004. Having been part of the UK EDS National Diagnostic Service since its foundation in 2009 she has developed a wide experience of all types of EDS.

My name is Clare Hitch, I am from Cheshire, England. I have vascular EDS, I was diagnosed when I was 18years old following 2 carotid artery dissections a year apart resulting in a stroke and a TIA. I have tortuous arteries in my head and neck which seem to cause pulsating tinnitus and migraines. I have a heart murmur (mitral valve prolapse) which has never caused me any problems. I also have some hypermobility in my joint which does cause daily joint pain.

ENT Symptoms: Swallowing and Voice – Mr. Gary Wood and Melanie Ditmore

He is a Principal Speech and Language Therapist working with Adult and Paediatric Voice disorders and ENT swallowing problems. Working full time in ENT since 1994, he has many years of experience working with the voice and swallowing when it goes wrong. He has specialised further in the field of voice with interests in singer’s rehabilitation, endoscopy procedures, hypermobility disorders, transgender voice & endocrine voice disorders and airway disorders. He is also a senior member of the ENT swallowing service, which assesses and treats ENT-related (non-neurological) swallowing issues. He works in the NHS at Then Royal National Ear, Nose and Throat Hospital and Eastman Dental Hospital which is now part of university college London hospital. Privately he practices as a Consultant Speech Therapist at The Harley Street ENT Clinic one day a week. gary.wood1@nhs.net / g.wood@harleystreetent.com

I’m Melanie, mum of two grown ups, Harriet & Jonathon, celebrating my 25th wedding anniversary to Paul this October and fur mum to Dexter. I have HEDS, Chiari Malformation 1, Mast Cell Activation Syndrome, hypothyroidism and all of the fun things that come from that collection. I currently work part time as an Advocate ensuring that people’s voices are heard when decisions are being made on their behalf and that their human rights are understood and upheld. I spend a lot of time supporting people with disabilities and learning/capacity difficulties, covering everything from community involvement to support with understanding serious medical treatment. I spend a lot of my spare time completing various physio exercises and trying to stay as strong as possible and love spending time outside trying to walk as far as possible with my husky. I have a plant based diet that is low fodmap and preferably gluten free.

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