PINFIELD Janet

 Janet Pinfield, BSc BA Cert Ed.

Patient Advocate

Janet was diagnosed with Kallmann Syndrome and severe osteoporosis at the age of 48. This was despite many attempts since about age 17 to obtain a diagnosis and appropriate treatment for her symptoms. Although long term treatment was started after a late diagnosis, there was very little information about the syndrome given to her by her doctors.

When the internet became available, in early 2000 she became a member of the English language Yahoo self-help group for people with Kallmann Syndrome and other forms of hypogonadism. Since then, she has been very active in that group. She looks for relevant research papers and explains the syndrome in plain English for people with no scientific/medical background and for whom English may not be their first language. She is also a member of the Yahoo groups for Kallmann Syndrome in German, Italian and Spanish languages. Although she is far less active in those groups, she has posted to them information about this COST Action.

Since retirement, as a mature student she graduated in 2013 with a BSc (Hons) in Life Sciences and will study for an MSc in Molecular Biotechnology in 2014/2015.

Janet's prime concerns are that patients with GnRH deficiency are diagnosed and treated early, are given complete information and that the potential psychological impact of this condition is taken into account by clinicians.

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