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Survey results for Kallmann syndrome / CHH patients.

Over the past couple of months, I have placed online anonymous surveys in the Facebook patient groups. The idea was to gain an idea of the experiences and opinions of fellow Kallmann syndrome / CHH patients and try to see if there were any shared experiences.

Since Kallmann syndrome / CHH covers a broad spectrum of symptoms with different severities there should be some differences, especially when people are diagnosed and treated at different ages.

The results can be found using this link:

Link to survey results on DelayedPuberty.com

Some of the results were as expected.

It is clear that a lot of Kallmann syndrome / CHH patients feel that the psychological issues associated with having the condition are not often recognised or discussed. Early treatment and diagnosis can help but more support is required.

It was perhaps reassuring to see that a good majority of people who responded did not experience negative comments about after having sexual experiences. This perhaps could be reassuring to younger patients.

I find interacting with fellow patients, both in person and online very helpful. Since Kallmann syndrome / CHH is so rare it is important for patients to be able to talk to fellow patients to gain more information and to know what questions to ask their doctors.

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US Patient meeting in Boston.

We are hosting a US patient meeting on 17th November 2018 at Boston College in Chestnut Hill, Boston, MA.

The meeting will be hosted by Dr Andrew Dwyer and a specialist from the Reproductive Endocrinology Unit at Massachusetts General Hospital in Boston.

The meeting will be held from 11am to 4pm. There will also be a dinner after the event at a local restaurant. The college is in the Chestnut Hill area of Boston and is served by the green line of the MBTA subway. It is also accessible by bus from downtown Boston.

The meeting will be a good chance to meet fellow patients in a friendly, relaxed environment and to be able to ask specialists in Kallmann syndrome questions about the condition.

Dr Dwyer is a an experienced Kallmann syndrome researcher and clinical specialist nurse with a special interest in developing web-based patient materials to help both patients and clinicians interact more and gain a better understanding of the condition.

For more details e-mail:

 

Anonymous online​ surveys for KS / CHH patients update.

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. Links below.

https://www.surveymonkey.co.uk/r/D5S2FS8

https://www.surveymonkey.co.uk/r/7HFNS73

https://www.surveymonkey.co.uk/r/KRL8MDF

https://www.surveymonkey.co.uk/r/52G32RP

 

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.

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

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

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