Sofie and familyMEDICAL

Wrongly accused of child abuse

Interview with Sofie Hellström, mother of Gabriel, affected by a milder form of OI type 4 Who are you and what is your relationship to OI? My name is Sofie Hellström, I am 31 years old and I was introduced to OI in the summer 2020 when my son was diagnosed with a milder form…

READ MORE
MEDICAL

OI & Reproduction

Dr. Lidiia Zhytnik is a post-doc researcher at UMC Amsterdam, The Netherlands and a member of OIFE’s Medical Advisory Board. She has been part of a team who made a narrative review to systematize novel insights into OI genetics, reproductive options, family planning, decision-making and ethical issues. The team aimed to fill the existing gaps…

READ MORE
MEDICAL

Virtual forum for OI surgeons

Interview with Dr. Jeanne Franzone & Dr. Richard Kruse, Nemours Alfred I. duPont Hospital for Children, Wilmington, Delaware, USA Soon after the initiation of the COVID pandemic, in June of 2020, Dr. Jeanne Franzone c (Nemours Alfred I. duPont Hospital for Children, Wilmington, DE), Dr. Maegen Wallace (Children’s Hospital and Medical Center Omaha, NE) and Dr.…

READ MORE
Pregnant belly and x-rayMEDICAL

Pregnancy in women with OI & Osteoporosis

By Claudia Finis, mother with OI and Prof. Dr. Ralf Oheim, Chair of the National Bone Board at Universitäts-Klinikum Hamburg-Eppendorf, Germany Claudia: “I can still remember the time when I felt like a big whale on four wheels meandering through the world. A vague idea about the existence of my knees and permanent heartburn accompanied…

READ MORE
MEDICAL

Family planning amoung young adults with OI

Interview with Leanne Baird, graduate of the University of Cincinnati Genetic Counseling Graduate Program Who are you & what is your relationship to OI? My name is Leanne Baird, and I am a recent graduate of the University of Cincinnati Genetic Counseling Graduate Program in the US. I have a passion for educating patients about…

READ MORE
MEDICAL

Heart & lung risks in adults with OI

Interview with Robert A. Sandhaus, MD, PhD, FCCP, respirologist at National Jewish Health in Denver, Colorado Who are you & what is your relationship to OI? I’m Robert A. Sandhaus, MD, PhD, FCCP, although my patients call me Dr. Sandy. I’m a respirologist at National Jewish Health in Denver, Colorado where I lead a team…

READ MORE
MEDICAL

Survey on pregnancy & family planning

Do you think there should be more information or education on contraception & OI, on pregnancy & OI, on preimplanation genetic diagnosis (PGD), on breastfeeding or other issues related to pregnancy or family planning? Then now is your chance to tell the decision makers! The European Reference Networks including ERN BOND – European Reference Network…

READ MORE
Graphic showing bars and linesMEDICAL

Registry Research in Denmark

My name is Lars Folkestad. I am an associate professor and staff specialist at the department of endocrinology at Odense University Hospital. There I am part of the team that follows and cares for adults with OI. We are aiming towards a multi-disciplinary approach to our outpatient OI clinic visits, but most of our efforts…

READ MORE
MEDICAL

A Roadmap to Surgery in OI

Interview with Ralph J.B. Sakkers, MD, PhD, Paediatric Orthopaedic Surgeon, Department of Orthopaedic Surgery, University Medical Center Utrecht, The Netherlands & Simona Paveri and Leonardo Panzeri, Italian OI-association As.It.OI What was the purpose of the project “Roadmap to Surgery in OI”? Dr. Sakkers: Purpose of the project Roadmap to Surgery in OI was to create…

READ MORE
Translate »