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

April 18, 2019

 

 

 

 

 

 

 

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.

7 Comments
  1. Jeff permalink

    Hi when is the next meeting. My son has kallmans syndrome.

    • We have a meeting planned for Sat 12th October 2019 at Boston College, Boston USA. Hosted by Andrew Dwyer and experts from the Reproductive Endocrinology unit from Massachusetts General Hospital in Boston.

      We normally have patients of all ages attend the meeting, along with parents and families if they wish.

      • Jeff permalink

        Thanks very much. My son has kallmans he just turned 19 we found out around 15. He did see Dr Rava at Harvard and participated in research with Dr. Delaney at NIH. He sees a pediatric endocrinologist at NYU and has him injecting 250 every 3 weeks. He is concerned about infertility and would like to start treatments in a year and a half. He was born with his testicles in the normal place. I was told his odds are good. but we are very worried.

      • Dr Delaney has recently moved on from the NIH but they are a good team to be in contact with. They work with the specialists at MGH in Boston.

        350mg every 3 weeks sounds a standard dose to start, some men do find that 200 or 250mg every 2 weeks sometimes works better as there can be a drop off in the testosterone level in the third week.

        It is something your son will be able to discuss with his endocrinologist, at 19 he must be switching over to the adult team I suspect.

        The success rate for fertility for male KS is quoted as being around 70 to 75%. Not having undescended testicles at birth will help.

      • Jeff permalink

        She only has him on 250 for every 3 weeks. I argued that it seems low. I do not think he was treated correctIy she had him on 200 for a long time.need to transition him to an adult team. However my son likes her and she has been very optimistic in regards to him having children.Do you know any experts in the NY area. 75 seems low. Dr Delaney was very optimistic regarding his chances. I was told 80 percent? even then those odds bother me. It causes me to lose sleep.

      • I will e-mail you directly with more information.

      • The testicles will not grow while on testosterone therapy but they can be made to produce their own sperm and testosterone using gonadotropin therapy.

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