@DrAllyLouks I have Kallmann syndrome so have congenital anosmia. The Canadian poet / author, Brian Brett, wrote about his experiences with Kallmann syndrome in some of his books. One was called "Uproar's Your Only Music" in 2004, but have never seen a copy of it myself.

@EuroSPE As a patient, attending presentations on #hypogonadotropic hypogonadism and the importance of genetic testing and mini puberty.

I am very grateful to @EuroSPE and @RareEndoERN for the chance to present at the conference. The incidence of #Kallmann / CHH is thought to be around 1/10,000 to 1/50,000 in males, which means there are an estimated 20 - 50 people born with the condition every year in the UK.

A condition that affects the hypothalamus more than the pituitary but it does affect the release of pituitary hormones. #pituitaryawrenessmonth #pituitary #hypothalamus #endocrine #raredisorder #puberty #kallmann #hypogonadotropic

@AndyThurogood Aigburth Cricket Ground, home of Liverpool Cricket Club. Pavilion built in the 1880's, listed building. Hosted a First Class cricket match in 1881. Long walk up the stairs to score on the 3rd floor balcony. Still used by Lancashire CCC as a 1st XI and 2nd XI ground.

Four enjoyable days scoring the Test match at Lord's with a very good colleague and helpful team in the scorebox & scoreboard. A few other people scoring the match at the same time but we were the ones the umpires were signalling to. #cricketscoring

@bbctms @ZaltzCricket Linear scoring is certainly the way to go. My linear sheets from the Test match at Lord's as one of the two official scorers. Not as neat or colourful as others can do but we were computer scoring at the same time. The linear sheets are a back up.

Day out at the the home of cricket today. Running the scoreboard for MCC regional T2O matches.

@EuroSPE I am looking forward to attending the meeting. Today, I submitted my abstract for the presentation I am giving as a patient with a rare disorder. #kallmannsyndrome

At least we managed to get the match finished before the rain came. #cricketscoring

@PatientWorthy It might be the fact that society does not really care about any #raredisease unless it affects them or a close family member directly. Rare disease patients need a voice and recognition just as much as any other group of patients.

@Stintastic @HillingdonPosh I always enjoy the chance of operating the manual board at Lord's. It is good to experience the atmosphere of a full house and less pressure than being the official scorers in the box above. I have been caught on Sky cameras a couple of times in the past I think.

@MediTalkWorld I have #Kallmann syndrome and am quite happy to talk about my condition. I will send a e-mail.

Watching the live feed from Lord's with commentary from @KevinHandSport is far more exciting than watching England play football at the moment. Hopefully @Middlesex_CCC can complete the job with the bat.

It was good to meet up with reproductive endocrinologist specialists I have known over the years. It was also useful to meet with a couple of other patient group representatives and hear about their experiences. #endocrinology #patientadvocacy #kallmann #raredisease #puberty

At least 4 people on the flight carry cardboard poster carriers. Have to wonder if they are attending #endo2024 as well.