Defending the Rights of ALL Patients, Living and Dead

on Tuesday, December 27, 2011. Posted in Blog

Defending the Rights of ALL Patients, Living and Dead

Wayne N. Brown

 

Death.  The ultimate unknown.  People fear it because we literally have no idea what awaits us.  For this reason, it is the ultimate honor of trust when a person asks someone to execute their final wishes.  In the 1780’s, while the people of France and the future United States fought for their individual rights, one man in London got double-crossed by the people he trusted to enforce his wishes into death; and just recently, in 2011, got those same wishes betrayed again, in the name of science--- again.

Charles Byrne, more famously known as the “Irish Giant,” paid his bills by essentially selling his privacy to work for Cox Museum as a sort of local “freak” at 7 foot 7 inches.  His height was even more intriguing back then than it is today.  With a median height at the time of about 66 inches tall (Health and welfare during industrialization, Richard Hall Steckel, Roderick Floud), Byrne was more than two feet taller than his contemporaries, a dubious honor and stressful life for a man who only lived a short 22 years.  The notion of the stress he lived with is reinforced by anecdotal evidence of this man devouring himself in alcohol towards the end of his short life.  Byrne carved out a financial living for himself, with no regard to what effect it would have on his emotional life; so after he died he wanted to be buried at sea; a simple and very reasonable request that would be totally ignored by the people he most trusted.  Local surgeon John Hunter bribed a member of the funeral party to remove Byrne’s body so he may study it.  From the moment Byrne passed on, Byrne’s body, and now skeleton, have been treated as an enviable possession for people interested in the study of pituitary and growth disorders.  Now, 228 years later, the Royal College of Surgeons in London still refuses to let Mr. Byrne rest in peace after turning down yet another request for his watery burial, as recently as this past week.

Speaking as an Acromegaly patient and also as a patient advocate for people coping with Acromegaly, I am conflicted- because I would love to think that there is a cure to this disease hiding in Byrne’s bones, but after two centuries, I believe that this hope has likely faded.  Acromegaly, a disease that causes an overproduction of growth hormone can cause all sorts of life-altering symptoms including: changes in the face and body structure, severe arthritis, headaches, severe joint pain, and severe heart conditions, just to name a few symptoms.  If there were a chance to still discover a cure from studying Byrne’s DNA, it seems likely that science would already be on the right track, and if they are really that close, why not simply give a promise to bury the bones by ___ date?  As another option, it seems that they could simply extract a sample of remaining DNA for further study.  The overarching question is, does the college really need the bones to be studied in new and different ways that have done in two-and-a-quarter centuries, or is the college finding benefit in “letting” Charles Byrne continue to work as part of some involuntary ‘freak show?’

How is it that the man died so many years ago and his wishes are still being blatantly ignored- or does willful ignorance become easier as time passes, now that Byrne has no voice, and his family seems to have all passed on, are unaware, or disinterested in the welfare of their long-gone relation.

If you are looking for Acromegaly patients to fill Byrne’s stead, we have them all around the world begging to get medical attention, and they are alive.  There are many who can’t afford medical care, and would happily take your attention- as long as your respect comes right along with it.  Patients and their loved ones can answer your questions, and even give you responses, something you may find difficult in a man born while the Seven Years War was still being fought.  Now, there are a lot of wonderful doctors and research facilities working tirelessly on the cure and treatment for people enduring this terrible condition, and it is time to let Charles Byrne have his wishes granted.  He did not wish to spend eternity as an exhibit in a museum, being photographed and ogled by student doctors, interns, and tourists.  There are plenty of patients who donate their bodies to research and study after they pass- I would encourage you to study those patients and let Charles Byrne step down from the stage.

Death should be the ultimate escape.  From pain, from embarrassment, and from ridicule.  The offense here is merely heightened by the fact that it is a hospital and an institution of higher learning guilty of this gross offense against a man unable to protect himself.  After all, the Hippocratic Oath says to first do no harm.  It seems that this requirement should follow, even into a person’s death.

 

Wayne Brown is the founder of Acromegaly Community; a group focused on patient advocacy, and was the lead writer for the collaborative book Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World.  He can be reached at This e-mail address is being protected from spambots. You need JavaScript enabled to view it

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Comments (1)

  • Amanda
    Amanda
    14 February 2012 at 00:11 |

    That's horrible, really unbelievable! Like you said, study someone who is alive and has been getting current treatment. Obviously that would help! I am an organ donor. Filled out my form and sent it out 9 years ago or so. I'm sure there are many other people out there with Acromegaly that are organ donors and are much older than I. Why not study them; Afterall, they did give consent!

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