"Alone in My Universe" - Finally in my hands!!

Hi, I'm Ayaka (Sara) from Japan.

Last week, I ordered the book, "Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World." I was initially told that it may take up to 3-4 weeks to Japan, so I thought the books will be delivered in April. Yet, they got here in Tokyo today, March 31st.  SUPER!!

I will give several copies to my primary physicians. I'm sure they will love it.

I scanned the book, and it seems to have wonderful stories from patients and useful information from professionals.

I'm so excited to start reading the entire book.

Thank you, Wayne, for all the work to make this project possible!

Purchase from Amazon.com

Purchase from iUniverse

No Levothyroxine?

Hi, I'm an acro buddy in Tokyo, Japan.
I can't believe one week has already passed since the quake.
You probably know about scheduled blackout and all that, but beside, I'm now very concerned for some pituitary/thyroid patients.

Levothyroxine may become unavailable in Japan.

Here is what is going on...

ASKA Pharmaceutical's Thyradin has a 98% share of levothyroxine in Japan.  Their plant is in Iwaki City in Fukushima Prefecture, where the quake hit massively.  What happened was that there were some damages in the facility, so they cannot produce this medication at this point.

We do have one week month of stock in the nation, but it is clear that we are going to run out pretty soon.  I heard Japan will import levothyroxine from other countries. I hope this problem is going to get solved very soon for all the patients who take this medication.

Fascinating glimpse into the life of a doctor with Acromegaly

from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1825563/pdf/canmedaj00702-0063.pdf (PDF), via Jon

ACROMEGALY AND DR. MARK
S. S. B. GILDER, M.B., Toronto

ON FEBRUARY 4, 1855, an individual was born whose chief claim to fame is that he later developed acromegaly and left us a detailed account of his sufferings. Dr. Leonard Portal Mark was the son of the British Consul at Marseilles and was educated in France and at St. Bartholomew's Hospital, London, which he later served as Draughtsman of Pathology-a forerunner of our present race of medical illustrators.  

Dr. Mark, who in spite of his acromegaly lived to the age of 75, appears to have been a charming Victorian gentleman, bilingual in French and English, cultured, of considerable artistic talent, and with a good athletic background in his youth. After qualification and the completion of his intern appointments Dr. Mark seemed destined to become a fashionable London practitioner. In his book, "Acromegaly. A Personal Experience," he shows how this pleasant outlook was marred by the insidious onset of acromegaly, which gradually took from him much of the enjoyment of life. He begins his book by saying: "When Fate, shaping my 'ends,' decreed that I was to suffer from the malady Acromegaly (akra = ends, itiega big), she perhaps gave me the greatest compensation possible by causing me to enter the medical profession. After the distress caused bv the one and the enjoyment due to the otherboth extending over more than a quarter of a century-I find myself in the unique position of being able to relate a personal experience of this rare complaint as it affected one with some medical knowledge." 

There are several interesting features of this book. In the first place, it did not appear until 1912. when Dr. Mark had had the disease for some 30 years, because for a very long time the stufferer failed completely to diagnose his own case. Fortunately, he had, as a good Victorian, kept a diary from the age of 14 and was able in retrospect to place the date of commencement as 1879 when he was a man of 24. It must be remembered, of course, that the condition was described by Pierre Marie of Paris only seven years later, in 1886, but the striking appearance of acromegalics ensured a rapid diffusion of knowledge of Marie's contribution. 

Although Dr. Mark took about 25 years to diagnose his own condition, others had been aware of it for some years. It was probably first discovered by a friend, Dr. Lloyd, who had to give Mark gas for a dental extraction and called the attention of the dentist to the typically acromegalic lower jaw. A little later, Dr. Archibald Carrod, the Barts' physician, made the diagnosis in a teashop. Mlost dramatic of all, Pierre Marie Canad. M. A. J. Feb. 1, 1955, vol. 72 himself picked Mark out of a crowd at an AngloFrench Medical Congress in London as a typical acromegalic. Yet nobody thought of telling poor Mark what was the matter with him though he lhad an impressive list of symptoms for which he consulted medical colleagues fairly frequently. Some, of course, ssumed that the diagnosis was so obvious that Mark must be aware of it. For example, his brother-in-law, who had been let into the secret, called on him one day and discovered a reprint of an article on acromegaly lving on Mark's table; he drew the natural conclusion that Mark had been studying his own case. 

The most astonishing feature of the situation is Dr. Mlark's own diagnostic blindness, in spite of a very human preoccupation with his many disabling symptoms. He says, "For some 15 or 20 years, each day when I looked into the glass to brush my hair or to shave, there was a typical acromegalic literally staring me in the face. Yet 1 never recognized the fact." He had noticed for years that his hands were getting bigger, yet he never guessed the reason. When he got out his last winter's gloves, and was unable to get them on, he assumed that they had shrunk in the interval. He had arguments with his bootmaker because his boots appeared to shrink, and this malady unaccountably afflicted his hats as well.
The progressive protrusion of the lower jaw made it impossible to chew anything, and his dentist had to fit a denture over the upper teeth to establish contact with the lowers. He remarks that he lost his ability to whistle, and also that his enlarged tongue interfered with his breathing at night (indeed, it almost led to his death under general anaesthesia). And still the diagnosis eluded him. 

At last, one day when he was already 50, the diagnosis came to him while he was walking in the street. He at once discovered that his secret was a secret de polichinelle, and was at first somewhat annoyed at the attitude of his friends. He says, "I felt somehow that I had been duped, that things which I ought to have known, and which by right were mine, had been kept from me. I amn glad to say that this feeling passed away in a few days, and I realized that my friends acted for the best." "Every day since then I . . . . have been more and more convinced that I got my knowledge quite soon enough. 

There are some interesting points of ethics arising from this story. Resisting the temptation to reopen the question of the patient's right to know the truth, we may however note the relation of this case history (which, by the way, includes such classical symptoms as headache, visual disturbances, increasing weakness, and disturbance of sleep rhythm) to the common insistence on early diagnosis. Here is the extraordinary spectacle of an intelligent and well-read clinician failing to make a diagnosis which a finalyear student should be able to make at a glance. Dr. Mark sums up the situation with one of his characteristic touches of humour. "We often pray for 'the gift to see ourselves as others see us.' A vain prayer, methinks, when we realize how blind we would still be if it were granted."  

To close the story, it should be recorded that from the time when Dr. Mark made the diagnosis to the end of his life at the age of 75 he devoted much of his time to attempts to further the knowledge of acromegaly. His name should be added to the roll of those who out of affliction have drawn profit for their fellow-men.

A simple questionnaire to detect acromegaly

A simple questionnaire given to 17,000 patients has revealed a practical and cost effective way to discover undiagnosed acromegaly patients.  The study also suggested a much higher prevalence of acromegaly than previously considered.  The simplest question asked: Has your shoe size increased over the past five years?   (I’ve been suggesting this routine question for many years).

A simple questionnaire to screen for acromegaly

via Jon - thanks!

BBC Radio Documentary: "A Tall Story"

This new BBC radio documentary reveals how it was discovered that, in extremely rare cases, acromegaly/gigantism can have an hereditary cause.  For over 99% of patients, however, the cause is still unknown.

BBC Radio Documentary: A Tall Story

The programme will only be available on the internet for the next 7 days, so make sure to listen and share with those you think might be interested right away!

(Thanks to Jon for sending!)