I am looking to produce a few anonymous surveys in order to find out more about KS / CHH patients and help to answer some of the questions patients have about age of diagnosis, treatment methods and additional symptoms.
In addition to 4 main groups on Facebook there are other ways of connecting to fellow KS / CHH patients.
One new way is on the Discord platform which allows text and voice chat, either in groups or privately. We have set up a dedicated channel for KS / CHH patients.
You do not need to be a gamer to use the service, anybody can join up and talk to other patients.
We hope to set up group chat sessions so that people can talk to a group of fellow patients at the same time.
Andrew Dwyer is a leading clinical researcher in KS / CHH, having worked both at MGH in Boston and CHUV, Lausanne in Switzerland. He is currently working at Boston College in the US and is a leading advocate in helping patients gain more information about their condition.
Andrew Dwyer is in the process of submitting a grant application for a patient resource package to run alongside the clinical & research work done at MGH in Boston.
If the funding is approved he is looking to develop a patient orientated website that will allow patients to access information and to contact fellow patients and KS medical experts.
Some of the ideas put forward have been video sessions with fellow patients and doctors where patients can ask questions.
Short video presentations where Andrew can help explain or answer a particular question or topic. We have done patient information videos and patient information sheets in the past but the aim is to bring all the materials into one place, under an approved and verified hospital website so that patients and other interested people can obtain good quality information.
These patient information sheets and videos can be found in other posts on this Blog site.
Andrew would like the help of patients in this process, both in terms of ideas and hopefully patients who can contribute to the website with their own stories and experiences.
People can contact Andrew directly at: email@example.com
Research study in Belgium.
There is a proposed study looking into brain development or changes (plasticity) in patients with KS / CHH and to see if there are any changes related to hormone therapy when compared to a control group.
It is a 2 hour test which would involve a MRI, smell test and a interview. They are looking for both male and female patients.
Apparently they will pay expenses and accommodation to visit the treatment centre in Belgium.
I think they are after European patients mainly but there is no harm in contacting them for more information if you are interested.
Dr Andrew Dwyer is a nurse practitioner and clinical researcher with over 15 years experience both in the US and Europe in treating patients with Kallmann syndrome and CHH.
These three videos are from an interview I had with him at Boston College in the US where I asked him some of the most frequently asked questions.
We are planning to hold a patient meeting for Kallmann syndrome / Congential Hypogonadotropic Hypogonadism patients in Boston, USA on Sat 21st October 2017.
The meeting will be held at the Reproductive Endocrine Unit at Massachusetts General Hospital in Boston.
It will be a good chance to meet fellow patients and to talk to experienced medical experts.
The meeting will be hosted by Dr Andrew Dwyer and clinicians from the Reproductive Endocrine Unit.
More details to follow later.