Author Aaron Davies talks about his experience with Kallmann syndrome in his book "Baggage Claim".
You Tube video - new diagnosis.
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.
US News Article on delayed puberty featuring Kallmann syndrome.
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.
On line clinical study from National Institutes for Health - Maryland.
Clinical study from the NIH in Maryland. They wish to conduct phone and on line interviews with KS / CHH patients about their experiences with the condition.
No visits, everything is done by phone or on line and they will pay compensation for your time.
Open to anybody, not just those in the US.
Kallman Syndrome - Our Journey With Samuel Vlog 2
Kallmann Syndrome - Our Journey With Samuel Vlog 1
Delayed puberty clinical trials at NIH, Maryland, USA.
There is a specialist pubertal development clinic run at the National Institutes for Health in Bethesda, Maryland, USA.
https://clinicaltrials.gov/ct2/show/NCT00494169
They have an on-going research programme designed for KS / CHH patients. It is a 3 or 4 day clinic where they run a series of diagnostic tests and give information on treatment. They work closely with the clinic at MGH in Boston. They will also undertake the genetic testing as well. They mainly see younger patients who are in the process of being diagnosed but are happy to hear from any patient.
The clinic is free to attend and they normally can help with travel costs from within the US. They have seen patients from overseas as well. I know at least one person from the UK who visited there last year. It can be a good way of getting more information about the condition and talk to experience KS clinicians.
They can give advice on fertility and hormonal replacement treatments and hopefully be able to put you in contact with KS specialists in your area.
The clinic is run by Dr Angela Delaney.
To contact them for more information e-mail Alessandro Albano on:
alessandro.albano@nih.gov
