What is HSD?
Dr. Howard Levy
Howard P Levy, MD, PhD, is an Associate Professor in the Department of Medicine at Johns Hopkins University. He received his PhD in Human Genetics and his MD from the University of Maryland, followed by an internal medicine residency at Boston University Medical Center. He started developing expertise in Ehlers Danlos syndrome during his medical genetics fellowship at the National Human Genome Research Institute, which he completed in 1995. He is board-certified in Internal Medicine and Clinical Genetics. In addition to caring for patients with EDS and related hereditary disorders of connective tissue, his interests include primary care of adults with genetic conditions, genetic risk assessment for common complex diseases, integration of genetics into primary care, and improving the efficiency, utility, and interoperability of EHRs (Electronic Health Records). Dr. Levy is the author of GeneReviews® “Ehlers-Danlos, Hypermobility Type.”
What is hEDS?
Dr Alan Hakim
Dr Hakim received his medical degrees from Cambridge University and trained in Medicine and Rheumatology at University College London Hospitals, UK. A consultant, clinician manager, and clinical academic, Dr Hakim has 20-years of experience in the field of hypermobility-related disorders, and has written 150 original scientific and education-related publications including 5 books. He is the clinical lead for The London Hypermobility Unit, The Wellington Hospital, UK; an Adjunct Assoc. Professor in Medicine, PennState, USA; has been a Chief Investigator in international clinical trials, an executive in hospital management, and a board member in healthcare commissioning; and, is the Chief Medical Officer to The Ehlers-Danlos Society.
Q&A with Drs. Levy & Hakim
Community Voices: Marina Lombardy
ENT Complications and Management
Professor Martin Birchall
Martin Birchall is a surgeon researcher at University College London and associated hospitals. He has pulled together multidisciplinary teams of scientists, engineers and clinicians to develop innovative solutions to loss of upper aerodigestive tract function, including problems with breathing, swallowing and voice. The work of these teams has delivered advances in laryngeal transplantation, organ tissue engineering and the application of soft robotics to lost motor function. His h-index is 46, with over 230 scientific papers.
ENT Symptoms & Treatment for EDS & Hypermobility Disorders: A Speech & Language Therapist Perspective
A Speech and Language Therapist working with Adult and Paediatric Voice disorders and ENT swallowing problems. He has over 25 years of experience working with the voice and swallowing when it goes wrong. He works at The Royal National Ear, Nose and Throat and Eastman’s Hospital London (UCLH). He has specialised further in the field of voice with interests in singer’s rehabilitation, endoscopy procedures, hypermobility disorders, transgender voice & endocrine voice disorders, airway disorders.
Dental Complications in EDS
Dr. Ines Kapferer-Seebacher
Key Skills specialist in periodontics; rare diseases with dental phenotype Qualifications 2000 – License in dental medicine, LMU Munich, Germany 2002 – Dr. med. dent. Thesis, Munich University of Technology, Germany 2010 – Master of science and specialist in periodontics, University Clinic of Dentistry, Medical University of Vienna, Austria 2013 – Habilitation (Private Docent), Medical University of Innsbruck, Austria Employment Experience 2000-2002 Private practice 2002-2006 University assistant, University Clinic of Dentistry, Medical University of Vienna, Austria 2006-2013 University assistant, Medical University of Innsbruck, Austria 2013-Assistant professor, Medical University of Innsbruck, Austria 2016-Associate Professor, Medical University of Innsbruck, Austria
Q&A with Prof. Birchall, Mr Wood and Dr Kapferer-Seebacher
I’m a former high school gymnast, became a long-distance runner and LOVED it!! I’m a freelance watercolor artist and last year had to apply (and received) disability due to hEDS. I live in Fort Collins, Colorado with my wife, Linda. I still try to remain active by riding an elliptical bicycle called the ElliptiGO. It allows me to reproduce the running motion with very little impact. Getting outside and being active in the Colorado sunshine is still a priority.
I have been clinically diagnosed with classical and hypermobile EDS. I wasn’t diagnosed until I was in my 40s but I had been pretty symptomatic for years. I had my only child at 32 after being told I wasn’t able to have children. The pregnancy marked the onset of my worst symptoms. I am unique only in that I was pretty much confined to my bed or wheelchair for years, lost in a fog of pain & confusion & have been given back my life again. I have lost 60# & completely changed everything.
Women’s Health Concerns
Dr. Natalie Blagowidow
Dr. Blagowidow received her MD degree from Cornell University Medical College, NY. Her residency training was in the Department of Obstetrics and Gynecology at the Hospital of the University of Pennsylvania, Philadelphia, PA. Dr. Blagowidow pursued specialty training as a Fellow in Reproductive Genetics and Human Genetics, Department of Obstetrics and Gynecology, Hospital of the University of Pennsylvania, and in the Division of Human Genetics at The Children’s Hospital of Philadelphia. Dr. Blagowidow is board-certified in both clinical genetics and clinical cytogenetics. She is also a Founding Fellow of the American College of Medical Genetics. Dr. Blagowidow’s clinical specialties include assessment of pregnancy by ultrasound including Doppler flow and 3D imaging and by invasive testing including CVS and amniocentesis.
Disorders of Bladder Function
Professor Vik Khullar
I am Professor of Urogynaecology from the UK and I have a longstanding interest in uterovaginal prolapse and urinary dysfunction in women with EDS.
Dr. Melissa Russo
Melissa L. Russo is a specialist in maternal-fetal medicine (high-risk obstetrics) and clinical genetics. Her current research is centered on pregnant women with connective tissue disorders and aortic disease. Her goals are to 1) empower women to make decisions about their reproductive choices and care during pregnancy and 2) educate health care providers on recognition and management of these disorders in pregnancy. She cares for individuals with all types of connective tissue conditions.
Q&A with Drs. Russo, Blagowidow, and Khullar
Anne lives in Helsinki, Finland and has been diagnosed with HSD. She works full-time as Web Editor with intranet, web and social media. She is interested in learning more about her condition and reads the research she gets her hands on. Anne also blogs in Finnish about her HSD and what she learns.
Treatment of Allergy and Immunology Issues
Dr. Anne Maitland
Dr. Anne Maitland has been named one of New York Times Super Doctors since 2011 and one of America’s Top 21 Women’s Doctors by Lifescript.com in 2009. She is a Fellow of the American College of Allergy, Asthma and Immunology and a member of the American Academy of Allergy, Asthma, and Immunology. Anne Maitland is active in local societies and the surrounding communities, to increase awareness of immune-mediated disorders, including primary immune deficiency and mast cell disorders. She is also involved with research to continually improve the treatments of classic allergic disorder and recurrent infections. Her clinical focus includes the diagnosis and treatment of allergic skin disorders, allergic rhinitis (hayfever), drug allergies, food allergies/sensitivities, asthma, and recurrent infections.
Breathing Difficulties in EDS
Dr. Rebecca Bascom
Dr. Rebecca Bascom’s specialties include Critical Care Medicine, Internal Medicine, Preventive Medicine and Pulmonary Disease.
Q&A with Drs. Maitland, and Bascom
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