Monday, July 6, 2009

HEAR YE, HEAR YE: Patients Talk about Life with Cushing's

You can read about Cushing's. This blog and many other websites offer the text version of this devastating disease.

Hearing people who have Cushing's describe their path to diagnosis and treatment is quite emotional, as it fills in the gaps between the written word. I am amazed at how people stumble onto diagnosis after years and years of being ignored by their doctors. Many Cushies visit five to ten doctors before they even see an endocrinologist, then many go to see several "endiots"--our affectionate term for endocrinologists who don't quite understand the way Cushing's presents in today's patients--before they receive the help they deserve.

Take a listen to real Cushing's patients who describe their onset of symptoms and how they fought to get the diagnosis. For anyone fighting this disease, it is truly heartbreaking to listen to how people have struggled and triumphed over this disease. I have yet to listen to one that did not bring tears to my eyes.

To all my fellow Cushing's patients out there who have fought this disease with such determination, courage, and moxie: I salute you. I dedicate all of these efforts to you, to us.

Go to the Cushing's Help and Support website to choose the podcast format of Cushie Chats: BlogTalkRadio or iTunes.

Go directly to Cushing's on BlogTalkRadio.


DEATH BY CUSHING'S: Accidental death verdict on 40-year-old mum

It is with a heavy heart that I share this story today about an unnecessary death, due to Cushing's. I send my most sincere condolences to the Richardson family and all those affected by Marie's passing.

This just shows that often MRIs miss teeny tiny tumors. Doctors were unsure if I had a pituitary tumor, although they agreed there was a suspicious area. During surgery, my neurosurgeon easily spotted the camera-shy tumor, which measured 3 millimeters or 0.12 of an inch. That's really small to wreak such havoc on the body. Dastardly little tumor!

If you think you have to waste, you are wrong.
If you don't fight to get yourself diagnosed and treated, then who will?
If not you, then who? If not now, then when?

~Cushie Melissa
Accidental death verdict on 40-year-old mum

Published Date: 03 July 2009
By Garth ApThomas

A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother.

Marie Richardson, of Bryn Hafod, died in March at the Maelor Hospital.

A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body's hormonal system.

The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge.

Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall.

Contributory factors in Mrs Richardson's death had been Cushing's disease, a very rare condition involving a hormone disorder, and bronchial pneumonia.

The court was told by Mrs Richardson's husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache.

Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital.

Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots.

She had been given a scan involving the pituitary and there was no evidence of a tumor.

It transpired the post-mortem had found Mrs Richardson did have a tumor, which had experienced bleeding.

Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still.

Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment.

Dr Stanaway said it would have to be a balanced decision but he felt that she would have been.

Legal representatives for Mrs Richardson's family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson's treatment while at the Maelor.

He said that with hindsight the only potential other avenue may have been if she had been given steroids.

But Dr Stanaway stressed he doubted this would have been successful, emphasizing Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her.

Recording his verdict of accidental death Mr Gittins emphasized: "This is not an indication of responsibility, blame or judgment.
"That is not my jurisdiction.

My very sincere condolences go to the family."

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* Last Updated: 03 July 2009 8:35 AM
* Location: Wrexham