The meeting will be in the same format as normal patient meetings. There will be a mixture of medical information and a chance to meet and talk to fellow patients. Normally we have a question and answer sessions and a group discussion. We tend not to have a formal agenda as these meetings tend to flow naturally with the questions people ask.
Dr Andrew Dwyer will host the meeting. He is currently working at Boston College, having previously worked at Massachusetts General Hospital in Boston and in Switzerland. We are hoping a couple of the specialists from MGH will be able to attend as well.
Normally we have between 15 to 20 people there of various ages. After the meeting, we normally have a dinner at a local restaurant somewhere.
Boston College is located in Newton, in the suburbs of Boston. It has its own station on the end of a Metro line, the journey normally takes about an hour from Logan airport or downtown Boston.
The meeting with be from 11 am to 4 pm.
Further details from:
Using "Survey Monkey" I have set up 4 separate surveys.
Survey 1. Initial survey
Survey 2. Symptoms and diagnosis
Survey 3. Body image, sex and sexuality
Survey 4. Depression and emotional issues.
The surveys will be open for another month.
Thank you to those who have already completed them. Once completed, the results will be compiled together and I will publish them here and in the Facebook groups. The aim is to provide an overall picture of the experiences of fellow patients and to see the similarities and differences.
The results are totally anonymous, there is absolutely no record of where the results have come from. It is purely a question of collecting numbers. I hope fellow patients can gain some insight into their own condition by seeing the responses of other patients.
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: firstname.lastname@example.org
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.