Environmental Issues and Cushing’s
We’ve had quite a bit of discussion on this topic on the Cushing’s Help message boards lately. A few samples:
We live in a part of Ontario known as “the Chemical Valley”. We are surrounded by Dow Chemical, Imperial Oil, Dupont, British Petroleum, Shell Oil and about 12 other chemical plants.
There has been many people complaining about the high rate of cancer in our area and the government was forced to do a health study in our area but as of yet they haven’t figured out how to do the testing. My guess is they don’t want us to know how sick we really are.
We are part of the Goiter Belt which I think extends to PA. There are very few people here who do not have thyroid problems.
My 2 brothers and 2 sisters are suffering the same as I am and so are all our children! Both my parents died in their 50’s from untreated hypothyroid disease. Probably had adrenal/pituitary damage too when I think about their symptoms.
I see hypothyroid people everywhere I look and have since started checking for the hump and cushing signs.
Holy endocrine system Batman, I think we are all suffering at the hands of the Big Oil Companies. My husband works for British Petroleum!!!!
I hate to even think about it. Growing up in Buffalo – erie county new york, which is nestled between lake ontario & lake erie, I don’t believe the water is safe to drink. There are several epa areas of concern around lake ontario & lake erie. AOC’s (areas of concern) are highly polluted areas. Specificlly erie canal & buffalo river are awful. I found out some years ago that a playground that I frequented as a child was a landfill for hazardous chemicals. Now I have a pituitary tumor, coincidence? Probably not
I live near Green Bay WI, which is part of Lake Michigan. I believe our drinking water comes from the Bay. The water is polluted from the papermills (PCPs). I also did play on a heavily fertilized and treated lawn from a chemical company for at least 5 years when I was little. I had a thyroid nodule removed, hypothyroidism, and I am still in the testing phase to see if I have a pituitary tumor. My father also has hopothyroid, and seems to have kind of a hump. He has had cancer as well.
I remember the nuclear accident in the 80’s. It was really scary. I remember them saying something like it was worse than what they reported.
This is one of my future quests, I live in a town on 10,000 people and there are many cases of brain and pituitary tumors, I hear it all the time, I know of at least 3 definite pituitary cushing’s cases in my small town. My future goal when I am feeling better is to put my story in the paper, have people call me if they or someone they know has a funtioning pituitary tumor, also brain tumors and brain cancer has some large numbers too. The state sent me a letter I had to fill out when I first found out about my tumor, it was manditory, if I did not fill it out they where going to have my doctor fill it out so I did. So somewhere someone is keeping track of brain tumors in my town. I want to find out the numbers, if it is as bad as I think it is I am going to calll CDC to find out why. I also want to start a support group. But I need to feel better first because this is going to be a big undertaking.
There are many more postings on this topic.
From Wennersten: There’s something in the water
Scientists now tell us there is something in our waters that we least expected.
That “something” is a class of chemicals called endocrine disruptors, and Dr. Vicki Blazer, a fisheries biologist at the United States Geological Survey, thinks the chemicals are responsible for the high concentrations of intersex fish found in the Potomac, and other rivers in the mid-Atlantic.
The chemicals also prove a threat to human health, but a bit of explanation, first.
Our body’s endocrine system is a complex network of glands and hormones that regulate growth, development, and the operation of various organs. The endocrine glands (for example the thyroid, adrenal, pancreas, testes, ovaries and pituitary glands) release hormones that act as chemical messengers and regulate many life functions.
Endocrine disrupters are chemicals that interfere with this system, by either acting like a hormone, or blocking a hormone’s function. They can be natural, but many are man-made such as PCBs, dioxin, DDT and other pesticides, pharmaceuticals and plasticizers. They are found in many products, including plastic bottles, metal food cans, detergents, flame retardants, food, toys, cosmetics and pesticides. They enter the environment and are now commonly found in our streams, rivers, bays and oceans, where scientists are observing problems.
Then Great Lakes Area of Concerns shows a map of problem areas
Forty-three AOCs have been identified: 26 located entirely within the United States; 12 located wholly within Canada; and five that are shared by both countries. Two Canadian AOCs have been delisted and one U.S. AOC has been delisted leaving 30 AOCs remaining on the U.S. side of the border.
RAPs are being developed for each of these AOCs to address impairments to any one of 14 beneficial uses (e.g., restrictions on fish and wildlife consumption, dredging activities, or drinking water consumption) associated with these areas. USEPA has assigned RAP Liaisons for AOCs. Sediments have been identified as serious problems in many AOCs. AOC Principles and Guidelines have been finalized for formally delisting these areas as beneficial uses are restored.
What do YOU think? Are you in one of these areas?
Participating in Life
I think that this is so important, especially with our health. Had I not been an active participant and followed several doctors’ advice 25 years ago, I’d most likely not been here to write this.
I see this all the time, though. Whatever the doctor says is true. People will say that the doctor gave me this or that med but they don’t know what it is for.
I just don’t get how people can take meds and not have a clue what they are, how they work, how they might interact with other drugs they may be taking. But it happens because people blindly follow whatever a doctor may give them.
Participation is so important – you have to know how YOU’RE feeling, what YOUR symptom are. Do your own research. Your doctor doesn’t know what it feels like to live in your body no matter how much you try to tell him/her.
Ultimately, you are the one who cares most about yourself and the only one who can make a difference through your research, thoughts and actions.
Just because a doctor gives you something, you don’t have to take it. 24 years ago a locally well-known neurologist “gave me” Xanax. Since he couldn’t see my tumor with his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed. Had I followed his advice, taken the Xanax and stopped pursuing a Cushing’s diagnosis I would most have likely died by now.
The doctor was going by the odds. The odds were that I really didn’t have a pituitary tumor. But I’m not a statistic and neither are you. Follow your instincts and take care of YOU. This is the only life you’ll ever have.
The most healing thing we can do for ourselves is to participate in the process of our lives as fully as we can-even when the unexpected and the fearful happen.
~Today’s Page-a-Day calendar
What do YOU do to keep participating in your health care and daily life?
Health Care Reform
This was in today’s online news, about a Cushie having to work two jobs to pay for her treatments.
Kim Yaman works two jobs to help pay for her mounting health care costs. Yaman has Cushing’s Disease, a rare tumor of the pituitary gland.
BY SARAH AVERY – Staff Writer
Galvanized by the difficulties a Cary woman has had paying medical bills despite two jobs and health insurance, a group of more than 60 community activists gathered in Raleigh on Saturday to raise support for a health care reform bill.
The group, all friends of Cary grandmother Kim Yaman, fanned out from downtown Raleigh to knock on doors and give out information about bills being considered in Washington.
A vote in the U.S. House of Representatives was on tap Saturday.
“I guess I’m a rallying point for why we need health care,” Yaman said.
Yaman, whose story was featured last month in The News & Observer as part of a series about health care reform, has Cushing’s Disease, a rare tumor of the pituitary gland. The illness causes weight gain, muscle weakness, high blood pressure and bone loss, among other problems.
For years, Yaman didn’t know what was causing her ill health, but frequent visits to doctors and myriad tests caused escalating medical bills. She took on a second job at the Galaxy Theater in Cary to augment her pay at the Wake County Public School System, but the expenses still mounted, despite insurance.
Last month, Yaman held a demonstration at Sen. Kay Hagan’s office to call for health reform that includes a public option. Yaman and friends handed out Moon Pies to passers-by, because they said they weren’t asking for the moon in seeking reform.
Saturday’s event drew community activists from Seattle, California, New York and Chicago – all who had worked with Yaman last year during the presidential campaigns and were eager to help a cause they hoped would help their friend.
savery@newsobserver.com or 919-829-4882from http://www.newsobserver.com/news/local_state/story/181016.html
How are you paying or the cost of testing, of surgery or meds? Personally, I don’t have the energy do much more than a part-time job.
Medical treatment of Cushing’s disease: Overview and recent findings
Published Date October 2009
Stephanie Smooke Praw1, Anthony P Heaney1,2
1Department of Medicine, 2Department of Neurosurgery, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA
Abstract: Cushing’s disease, due to pituitary adrenocorticotropic hormone (ACTH) hypersecretion, is the most common etiology of spontaneous excess cortisol production. The majority of pituitary tumors causing Cushing’s disease measure <1 cm and the excess morbidity associated with these tumors is mostly due to the effects of elevated, nonsuppressible, ACTH levels leading to adrenal steroid hypersecretion. Elevated circulating cortisol levels lead to abnormal fat deposition, hypertension, diabetes, coronary artery disease, osteoporosis, muscle weakness and psychological disturbances. At experienced centers, initial surgical remission rate via transnasal, transphenoidal resection approaches 80% for tumors less than 1 cm, but may be as low as 30% for larger lesions and long-term recurrence in all groups approaches 25%. Residual disease may be managed with more radical surgery, pituitary-directed radiation, bilateral adrenalectomy, or medical therapy. This paper addresses current and novel therapies in various stages of development for Cushing’s disease.
Keywords: Cushing’s disease, treatment, pasireotide, PPAR-γ, 11 β-hydroxysteroid dehydrogenase inhibitors, dopamine agonists
Download article (Free!): http://dovepress.com/getfile.php?fileID=5388
Interview with MaryO
The Call-In number for questions or comments is (646) 200-0162.
Cushing’s Help Founder, MaryO
“MaryO”, Mary O’Connor is the founder and webmaster for Cushings-Help.com and related sites. She is also a Piano Teacher and web designer in northern Virginia. She started having Cushing’s symptoms in early 1983 and finally had pituitary surgery at the NIH in November, 1987, Mary is a 25+ year survivor of Cushing’s Disease.
Due to her Cushing’s experiences and the lack of websites for people with Cushing’s, Mary founded the Cushings-Help website in 2000 to help others who were dealing with the rigors of testing and surgery.
MaryO, as she is fondly called by the members of the support board she runs in conjunction with the website, has been instrumental in educating thousands of people about Cushing’s. Through the use of her website and support boards, these same folks have been able to garner support and information invaluable to their diagnosis and treatment.
Mary is a survivor. Not only has she survived, but she has enabled so many others of us to survive, also.
She has been recognized in Forbes Magazine, many newspaper and journal articles, and is a speaker at Cushing’s Awareness events. She is married to Tom and has a grown son, Michael.
Intro: Hello, I have with us today Mary O’Connor, founder of the cushings dash help dot com website. Mary is a 20 plus year survivor of Cushing’s Disease. For those who do not know what Cushing’s Disease is, you may want to peruse the Cushings-help website. Briefly, it is an endocrine-related disease caused by a pituitary tumor (also called an adenoma) which causes life-threatening symptoms. Cushing’s Syndrome is a similar disease caused by an adrenal or other tumor.
MaryO, as she is fondly called by the members of the support board she runs in conjunction with the website, has been instrumental in educating thousands of people about Cushing’s. Through the use of her website and support boards, these same folks have been able to garner support and information invaluable to their diagnosis and treatment. She has been recognized in Forbes Magazine, many newspaper and journal articles, and is a speaker at Cushing’s Awareness events. She is married to Tom and has a grown son, Michael.
Mary, I know the listeners would love to hear your story. What can you tell us about your symptoms, diagnosis, and treatment with Cushing’s?
Other Topics Discussed:
- Why did you decide to start the cushings-help website?
- What are some of the things that can be found on the site?
- What are the message boards?
- How many members are there on the boards?
- How much work is involved in keeping up the site and the boards?
- How are you doing now? What has happened since your surgery for Cushing’s?
Closing: As you can see, Mary is a survivor. Not only has she survived, but she has enabled so many others of us to survive, also. Please stay tuned for more stories from these survivors! For more information, visit the cushings-help website.
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Read Mary’s bio.
Listen to MaryO’s Archived Interview from January 3, 2008