The case of Charles Martell – How far have we come?

Captain Charles Martell was the first recorded patient in North America to be diagnosed with what was considered the rare condition of hyperparathyroidism. The year was 1926.

In 1918, at 22 years of age and over six feet tall,  Charles Martell joined the Merchant Marines. In 1926, several years later, standing before Dr. Eugene DuBois, at Bellevue Hospital, New York City, he measured seven inches shorter. His legs appeared deformed and Charles reported a history of multiple fractures and disseminating pain.  Dr. DuBois referred Charles to Ward 4, Massachusetts General Hospital, Boston, a center founded by James Howard Means to research obscure medical conditions, where an honorary plaque celebrating the ethos of the new ward declared:

Patients are the primary knowledge keepers of their conditions and that they should be seen as indispensable, equal collaborators in pursuing the cause of medical research  ” for their own benefit and that of others”.

Learn more about Charles Martell in this interesting,  peer reviewed article written by Stephen Casper PhD BSc Department of Humanities and Social Sciences, Clarkson University, Potsdam, NY, through the link below. 

The Case of  Charles Martell and Ward 4 – 

So just how far have we come? Sadly, much of the language used to describe Charles’ early experiences sounds eerily similar to what patients’ experience today…. 

“He was investigated for years”.

“He underwent exploratory surgeries”.

” … it was a rare medical condition”. 

“The onset of illness was 1919. By 1923 (4 years) it had progressed to such a degree that he was forced to abandon his career”

“Nonetheless it was not until 1926 ( 7 years) that he would meet a physician who named his suffering.”

While much has been learned about hyperparathyroid disease over the last nine decades there is still much work to be done!

There are still strikingly different levels of understanding among medical professionals about this disease that isn’t so “rare”. As many physicians still seem to believe that it is, they often do not consider primary hyperparathyroidism as the root cause of patients’ symptoms (ie. brain fog, osteoporosis or kidney stones, to name a few).  Experts, on the other hand,  estimate that 1 in 50 women over the age of 50 have primary hyperparathyroid disease. (i.e., 2 % of this large population.)

Exploratory surgeries are still commonly performed, even though we know that there are better ways to go about surgically caring for patients.

Patients still lose their jobs or abandon their careers.

It is estimated that patients go undiagnosed on average, 8 years – no better track record than poor Charles.

Why?

1) Most people have never heard of their parathyroid glands nor are they aware of their critical function of regulating calcium in our bodies.

2) Although patients are treated for many of the debilitating symptoms of hyperparathyroidism for years, the root cause goes undiagnosed.

3) Patients, and too often medical professionals, are not familiar with ALL of the debilitating symptoms of the disease which can delay diagnosis.

4) Within the medical community, there is a lack of understanding as to the various biochemical presentations of hyperparathyroidism. Medical professional also may confuse whether hyperparathyroidism is Primary – resulting from one or more noncancerous adenomas, Secondary to another medical condition or Familial (FHH) /hyperplasia. Note: The majority of patients whose calcium is high have Primary hyperparathyroidism, which can be surgically cured.

5) There is no consistent standard for what the normal, age-dependent range of serum calcium should be. Experts concur that adults age 30+ generally have calcium values in the mid 9’s and hyperparathyroid disease should be suspected if values are 10.1 or above.

Read more about our Action Plan. 

Become educated! Ask smart questions and help create change!

screen-shot-2016-09-07-at-8-17-10-pm

 

 

 

 

 

 

 

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s