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USA Kallmann Syndrome Patient Meeting – Boston. 12th October 2019.

US Patient Meeting. Kallmann syndrome / CHH. Boston. 12th October 2019.

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Psychological Aspects of Congenital Hypogonadotropic Hypogonadism.

Psychological Aspects of Congenital Hypogonadotropic Hypogonadism

 

A link to a recently published article in Frontiers of Endocrinology. The psychological aspects of Kallmann syndrome is an area I am particualrly keen to explore as I feel it gets overlooked as health care professionals concentrate on the treating the physical effects of absent puberty and infertility.

A better understanding, appreciation and treatment for the psychological aspects of the condition could help a lot of patients, at whatever age they were diagnosed.

Having Kallmann syndrome / CHH means missing out not just on puberty but the emotional development of adoloescence. This can have a lasting impact for some patients. Some patients will be far more deeply affected than others but I think it would help to recognise those that need help and support as soon as possible after diagnosis.

This article is a just a brief introduction but I hope it could lead to further interest and study.

Article in UK “Chat” magazine.

There was an article published in “Chat” magazine in the UK. I think it is good to have any mention of my condition. I am not too sure about the “Peter Pan” reference but I see why they used it.

I wanted to get across the message that Kallmann syndrome / CHH was not the same as delayed puberty or being a “late bloomer”

There are patient meetings coming up for KS patients & families. The first is in London, UK on Sat 17th August at the Royal Free Hospital, the other is Sat 12th October at Boston College, USA.

Chat article page 1Chat article page 2Chat article page 3

 

 

UK Patient Meeting. London. 17th August 2019.

A meeting for Kallmann syndrome / CHH patients is due to be held at the Royal Free Hospital, London on Sat 17th August 2019 from 11:00 am to 4:30 pm

The meeting will be a chance for patients to meet fellow patients and to talk to KS medical experts.

 

The meeting is a mixture of medical information and social event.

Prof. Nelly Pitteloud from CHUV in Switzerland, a world-renowned KS expert will be in attendance along with at least two other KS experts from the UK.

The meeting will consist of a couple short presentations on the diagnosis and treatment of Kallmann syndrome plus a chance to ask the medical experts any questions about the condition. There will be plenty of opportunities to talk to fellow patients during the meeting.

Frequently asked questions with Dr Andrew Dwyer, Boston College, USA.

 

 

 

 

 

 

 

In October 2017 I met with Dr Andrew Dwyer of Boston College, USA to talk to him about Kallmann syndrome / CHH. Dr Dwyer is a senior nurse practitioner and clinical researcher who has worked in KS specialist centres in Boston and Lausanne, Switzerland and had published many papers on Kallmann syndrome.

We recorded a series of three videos where I asked him some of the most frequently asked questions I get when talking to fellow patients.

We are planning another patient meeting in Boston in October 2019 where we hope to produce some more YouTube videos.

Video 1.

Video 2.

Video 3.

There appears to be a delay in the audio starting on the videos, but it starts within 10 seconds, when you can restart the video from the start if required.

UK Guardian article on Kallmann syndrome patient.

The Guardian newspaper in the UK posted an interesting article about an American KS patient who had just undergone fertility treatment.

Guardian article.

It is always good to have the condition mentioned in a national newspaper. I am always keen to try to raise awareness of this rare condition.

Early diagnosis and treatment can help a lot with both male and female patients but there is a lot more to having Kallmann syndrome that can be mentioned in just one article.

The psychological issues of missing out on both puberty and adolescence can be severe for some patients. The term “late bloomer” tends to suggest that normal puberty eventually happens. This is certainly not the case and treatment can only alleviate some of the symptoms.

It is an invisible condition to most and not an easy one to talk about since it involves intimate physical development and infertility.

Basic hormone treatment is not available to every patient let alone the fertility treatments which are expensive and often difficult to obtain in any country.

Imgur post for Rare Disease Day 2019.

Rare Disease Day 2019. Kallmann syndrome – absent or impaired puberty. 

As part of Rare Disease Day 2019 I try to raise the awareness of Kallmann syndrome amongst the many other rare conditions out there.

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