US Kallmann syndrome patient meeting 2017.

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.

Mindcast Podcast on Kallmann syndrome.

Jason Grant Russell is a young Kallmann syndrome patient from Australia.

He recently had an interview recorded for a podcast where he talked about his early struggles with the condition and how those experiences have motivated him in his professional work.

Jason is open about his Kallmann syndrome and enjoys the chance to talk to fellow patients. His work not just as a physical trainer but as a motivational and development coach can help fellow patients in their own development.

 

Patient information sheets - translations into 21 different languages now available.


Produced by Dr Andrew Dwyer of CHUV, Switzerland in conjunction with Kallmann syndrome specialists across Europe these information sheets provide a concise introduction into Kallmann syndrome and CHH. Patient advocates have also been involved in the editing process to help ensure the information is relevant to newly diagnosed patients.

Once the English version had been finalised work was started on producing translation into various different languages. The translations were carried out by KS experts in that particular country. Patients can contact the person who translated the version in their own country if they want to speak to a KS expert in their country and who can speak their language. 

The translated versions can be found by following this link to my WordPress blog site.

"Ask Me Anything" on Reddit.

3 years ago I posted a "Ask me anything" article on Reddit about Kallmann syndrome.

I thought it was time to post a new article to try to raise awareness of the condition. I am always keen to talk to fellow patients with this condition. 


These are my hospital test results soon after I was diagnosed. The Perganol and Profasi mentioned were the medications I was due to start as part of a clinical trial soon after being diagnosed.

       

 

 

 

 


The test results immediately before starting the clinical trial. The testosterone level is even lower than before. The FSH and LH levels were also very low which is a classic pattern in Kallmann syndrome or congenital hypogonadotropic hypogonadism.