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2nd anonymous online survey.

2nd online anonymous survey

The second survey, totally anonymous. You should be able to see the current results when you have completed the survey. Thank you to those who have completed a survey already.

I will post full results when all the surveys are completed.

2nd online KS / CHH survey

This is a link to the preliminary results of the first survey after the first 100 responses. I will post full results of all the surverys once they are all completed.

Data_All_180629

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Anonymous online​ survey for KS / CHH patients.

I hope to create a few online surveys using SurveyMonkey to collect information on KS / CHH patients to see if there are any similarities or differences in our experiences with the condition.

The first survey is just a general introduction with simple questions. If there is enough interest I might generate more surveys with more personal/intimate​ questions.

There are some questions I know some KS / CHH patients want to ask but due to the nature of the condition,​​ they find it difficult to ask. I want to generate some anonymous information that could help answer fellow patient questions hopefully.

I will post the results of the surveys here and in the Facebook groups.

Initial survey 1 – KS / CHH

Radio interview with KS patient from Australia.

Jason is a KS patient from Australia. He is very happy to share his story of Kallmann syndrome and is very keen to contact and help fellow patients from around the world.

Jason is a professional fitness and motivational coach. This radio interview is a story of his experience with Kallmann syndrome growing up in Australia. Having been bullied in early life Jason turned his life around and used his experience with Kallmann syndrome to become a stronger person, both physically and mentally. He is keen to contact and help fellow patients with the same condition.

Your Third Voice Interview with Jason about Kallmann syndrome.

Jason’s Facebook profile.

Registering with a new GP.

For the first time in almost 13 years, I had to register with a new GP.  It went as well as it could have done in the end. I am asking to be referred to the KS specialist I know in Newcastle instead of the one in London I see at the moment. Hopefully, this can be done relatively easily. It is certainly not the closest endocrinologist I could see but I think it is worth the effort to travel a bit further to see one specialised in Kallmann syndrome. Seeing a KS specialist should help my chances of getting back onto fertility treatment,

I do not think the doctor had heard of Kallmann syndrome but we did not talk about it much, she agreed on my suggestion for the consultant referral and what blood tests I wanted with no argument which was good.

My testosterone level came back at 4.5 nmol/l (about 120 ng/dl for the Americans).  Most certainly on the low side as the low end for the normal range is 15 nmol/l. Since I last had a Nebido injection in early February the result was of no big surprise. The blood test result matched my physical symptoms and I knew the result would be low.

Getting hold of a new prescription for Nebido was easy enough, the tricky part is to find time to get an appointment to have it injected. You can in theory self-inject Nebido but it is not recommended and it would not be easy to do safely. I do have a small supply of testosterone gel sachets to keep me going until I can get the injection.

YouTube video on basic treatment options for Kallmann syndrome / CHH

YouTube video introduction to Kallmann syndrome / CHH

Kallmann syndrome meeting in Turkey.

https://www.facebook.com/kallmannsendromuvakfi

https://www.facebook.com/hipogonadizmorg

I recently had the pleasure of attending a Kallmann syndrome meeting in Istanbul, Turkey.

The meeting was organised by a KS patient living in Turkey who wanted to raise the awareness of the condition in his country. The professionally organised meeting was attended by patients, press & media and representatives from government agencies.

I gave a short presentation on my experience with Kallmann syndrome and on line patient support groups. I always enjoy the chance to talk about Kallmann syndrome.

It was good to meet some fellow patients from a different country and talk about similar shared experiences.

I enjoyed the chance of talking about Kallmann syndrome and would like the chance to talk at other meetings or conferences. I think it could be quite helpful for patients to be able to attend medical conferences, to help inform and educate doctors and health care professionals on what it is like to have a specific condition, especially with rare conditions.

On line research study for US patients taking testosterone therapy.

For American KS / CHH patients. I do not know anything about the study myself, just forwarding the post on in case anybody is interested in partcipating.
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Hey everyone! We are looking for U.S. men 21 years of age and older who are currently on prescription testosterone to complete a research study to learn more about men’s motivations for taking prescription testosterone and the broader prescription testosterone industry. Questions will include: perceived effects noticed before and after testosterone therapy, and basic demographic and general health information. To date, few studies address these themes from a patient perspective.
There are two options for this study:
 
1. A 10-40 minute online survey for which you will be compensated after completion: https://unlv.co1.qualtrics.com/jfe/form/SV_3OhPFNpLChBNjrD
 
Or
2. A scheduled 20-40 minute in-person, Skype or phone interview. Interviewees will be compensated a greater amount due to the added logistics of scheduling an interview.
 
Please note that a survey can only be completed one time. Start the survey only when you can finish it. You may pause the survey and return to it at any time, but can go back to previous questions. Survey links will be active 11am-12am PST, until the end of the study period.
Thanks so much!
 
Please follow the link to our consent form to learn more about the research study or contact me at the following information or via my social media account to participate or request more information:
 
Alex Straftis
Phone:(516) 502-8123, Email: Straftis@unlv.nevada.edu
University of Nevada, Las Vegas
Principle Investigator: Peter Gray, PhD
University of Nevada, Las Vegas
 

Communicating with other patients.

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.

https://discordapp.com/invite/c98Ubh

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.

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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: dwyeran@bc.edu

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