Pituitary News

Are Pituitary Tumors on the Rise?

For the last 6-8 weeks there has been a flury of articles, reports or research about pituitary tumors and/or the patients and giants affected with these tumors across the globe.

Perhaps the greatest news event which fell off all reporters radar was the discovery of the AIP Gene Mutation last month. "The Van Andel Institute (VARI) has identified a genetic mutation that is responsible for some cases of acromegaly."
Read the article at the VARI website here: http://www.vai.org/News/News/2009/08_21_Gigantism-Borneo.aspx
It's just me, but I am real excited about this discovery, the implications this discovery has for the future in how we treat and hopefully prevent these tumors. As another fortunate side effect of discovering this mutation, it's logical that other endocrine disorders will benefit as researchers advance and knowledge and understanding of this AIP Gene Mutation. Findings in this study showed some with the gene mutation did not have a pituitary tumor. They are thought to be carriers of this genetic code. ok ok...... enough of that one........ that news was the best news...........

Next Making Headlines in Illinois are stories of a class action Law Suit by some residents of McCullum Lake. When residents began seeing increased numbers of brain cancers and pituitary tumors far exceeding the expected incidence rates they began to take notice. Eventually a class action law suit was filed. Cluster or Coincidence? Read about this story here:
http://www.thefreelibrary.com/McCullom+Lake+Series:+Coincidence+or+Cluster,+by+Kevin+Craver+and...-a0176979336

Travel South into Florida and another story
Cluster of Pit Tumors Florida

From: http://www.wptv.com/news/local/story/Cancer-Cluster-Acreage-WPTV-BRAIN-TUMORS/M-eAO3c2okWUXnulEzJ3pw.cspx

Well the McCullum Lake and The Acerage stories make me wonder if some pituitary tumors are affected by environmental contaminants or background radiation and become active. One of the world's most famous giantess' Sandy Allen came from Illinois. Is there something in the water or soil which triggers this? I'm hoping researchers and patients involved who lived near McCullum Lake and in The Acerage in Florida would contribute and study their chromosones in AIP gene mutation studies.


From across the globe came a story out of India where it is reported to be a whole Village of Giants. Alwar, India is where people are being affected by contaminants in their environments. What is most news worthy are documented cases where people resumed growing long past their growing years. Read this story here: http://www.mid-day.com/news/2009/aug/230809-Kanchan-Pradeep-Sharma-abnormal-height-Alwar-Rajasthan-possible-pesticide-poisoning.htm


So, here's the question are pituitary tumors on the rise? Or are we recognizing more cases that would have previously remained unknown without the internet to bring these apparent clusters into focus? If previous and current incidence and prevelance rates are incorrect how would that affect funding for research? I can't help worry about this, currently research is funded in part through the Orphan Drug Act. Would funding dry up if this is not a rare disease? Would funding increase because more people would drop coins into the collection bin?
But in the end.......... It's not about the money.......... It's about people and the difficulties many will live with because for some reason a pituitary tumor wrecks havoc in their lives.

Not only in Florida or Illinois or India or Borneo............ We need to take an assessment of where people are being affected with pituitary tumors and study the commonalities. We need a world wide study to see how rare this really is.

Happy Birthday to Yao Defen

The Worlds Tallest Woman - Yao Deffen

Currently the Tallest Woman in the World at 7'8" - Today is Yao's Birthday she was born in 1972. Join me in sending Yao your best wishes and prayers today. Wherever you are Yao, Happy Birthday!!!

Yao was born in the town of Liuan in the Anhui province of Shucheng Country. Yao has endured so much during her lifetime, when she could not take advantage of her height in a sports career (due to the complications of acromegaly) Yao travelled with her father performing at different events across China.

Last year a media storm hit her with the story of trying to help her attain the medical treatment she needed for the pituitary tumor. She did receive treatments for her pituitary tumor it was not an easy task. It's not easy being big. Some of the articles/videos were heart wrenching, as onlookers would comment how stubborn she appeared to be where she was refusing to ride on the floor of a van so she could get to the hospital for treatment. It wasn't being stubborn, she knew her limits and would not be able to get off the floor of the van once there. It would have taken 7 or 8 men to pick her up, no room in one van for all those people. I can't imagine the emotional trauma she must have endured from people not understanding the challenges faced by acrogiants. More recently reports came through that she suffered a head injury a few months ago when she fell at her home and was hospitalized. In researching for this article, numerous attempts to find out how Yao Defen is today have all failed. I hope someone out there has more news on this brave lady and let me and the world know how she is doing. Their are several web sites that say an appeal has been set up to help support her but all links for this have gone dead that I can find. Many videos have been posted on You Tube about her life story. Please if you have any current information to share on Yao Defen leave a comment below and Thank-You for reading this blog.

Texas Giant - Jack Earl

Jacob Rheuben Ehrlich
Jack Earle
The Texas Giant

July 3, 1906 - July 18, 1952

Jacob Rheuben Ehrlich was born in Denver, Colorado July 3, 1906, he weighed only 4 pounds it is said some questioned if he would even survive he was so small. He made up for this lost ground and by age 10 he was 6' tall by 16 he had grown to 7'4". His family moved to El Paso, Texas where he graduated from El Paso High School. While still in El Paso Jack was "discovered" by a movie scout, Hollywood producers changed his name to Jack Earl and a silent movie film star was born. He starred in many films, the most notable were Jack and The Beanstalk (1924) and Hansel and Gretel (1923). Working on a film set one day Jack's acting career came to an end when he fell off some scaffolding. He woke up in the hospital and told he was loosing his peripheral vision due to a pituitary tumor (a type of brain tumor.) The pituitary gland is located approximately behind the eyes, often a pituitary tumor strangles the optic nerves, resulting in peripheral vision loss. This tunnel vision explained why he fell or walked off the scaffolding. Jack had acro/gigantism that accounted for his great height of 7'7 1/2". Doctors treated his tumor with months radiation that restored his peripheral vision and stopped his growth. H That fall may have saved his life although it ended his acting career. Next he became a traveling salesman for a wine company as the "Worlds Tallest Traveling Salesman."
Jack worked for a time in Texas as a Deputy Sheriff, and enrolled in a Community College. One day he heard that Jim Tarver "The Worlds Tallest Man" was appearing at the Barnum and Bailey Circus and he knew he was taller than Jim by a couple of inches. Clyde Ingalls the showman for Ringling Bros. spotted Jack and reportedly asked him "how would you like to be a giant?" he couldn't let an 8 foot tall man walk away. Jack would become the "Worlds Tallest Man." At the circus, on the side Jacks Giant Rings were sold as a souvenirs. In the early 1940's Jack retired from the circus and resumed work as a traveling salesman. An author Jack published a book of his poetry called the "The Long Shadows". It seems there was no limit to the talent this Texas Giant possessed. Jack also was a renowned painter, sculptor and photographer. Jack passed away at home in 1952 at the age of 46. And for your listening pleasure this tune by Tom Wait mentions Jack Earl in the lyrics called "Get behind the Mule" Hear it on YouTube here:
http://www.youtube.com/watch?v=ORSMACaVPYY


This Blogs for you Jack Earl -The Texas Giant.

__________________________
References:

SideShowWorld
From: http://www.sideshowworld.com/blowoff-JackEarle.html

The Internet Movie Database
From: http://www.imdb.com/name/nm0247325/bio

Secrets of the Side Show
http://books.google.com/books?id=sACcmMWM6t4C&pg=PA89&lpg=PA89&dq=Jack+Earl+Texas+Giant&source=bl&ots=vXP5QC-f3t&sig=s9oeobAs2N18-Fzy_VPdpNloqyY&hl=en&ei=WYRNSt_bBJXZlAfiz8TDBQ&sa=X&oi=book_result&ct=result&resnum=9

Tallest Woman Ever - Zeng Jinlian

Zeng Jinlian was born on June 26, 1964 in Yuijan Village, China. So in memory of the tallest lady to ever live this blog is for Zeng Jinlian. She passed away at the young age of 17 Feb. 13, 1982. According to Guinness Book of Records Zeng Jinlian was the tallest woman ever. Her height was recorded to be 8' 1 3/4". According to records her increased growth was apparent at 4 months old, at age 4 she was over 5' tall. Using these figures on average she would have grown 5 inches a year. Under the best of circumstances this rapid growth would have been extremely stressful on Zeng and her family especially in context of her locality where people do not grow so tall it had to be difficult. Zeng Jinlian is the only female to be included in the over eight foot club and only 11 men have made that distinction. Zeng would have been 45 today.

A Patients Handbook or Action Plan

A Patients Handbook or Action Plan

Part I

IF I KNEW THEN WHAT I KNOW NOW is what inspired this blog. At first I was going to tailor this for pituitary tumor patients but these hints may help others with different conditions. So here is in brief a suggested Action Plan or Handbook to take control of your diagnosis. A chronic or lifelong illness means you have this new and unwelcome life partner who requires lifelong management and control. For those challenged with rare disorders this is not an option. You have to become CEO for your health management. You have to, no one else is or will keep all your medical records updated and in one convenient location. YOU!!! Off the bat your wearing 2 new hats, the first hat will be as an unpaid insurance processor. The sooner you learn and adhere to the required procedures for filing new claims, getting treatments or medications at your insurance company the happier you will be. The second hat is that of an unofficial med student. You will be hearing medical terms and a language that is part Latin mixed into medico speak. You have to understand what you are being told. Learn the lingo. Get a medical dictionary from a thrift store or book store. Save info off line........ Read and Research and build your knowledge base.

***All sincere suggestions to improve this Handbook is Welcome,

I Would gladly edit and republish worthy improvements to this handbook for all our benefit***

Your Handbook might include (but not limited to) the following.

I suggest getting at least two binders, dividers, pockets, sheet protectors. One book will be for all your doctors and insurance information. The second binder will be where you keep your research.

The first page to prepare is a patient history and information page your tear sheet this you will keep 2 copies of. One for your first page of your health record book. The second (a copy) being for giving to all new doctors and/or emergency doctors who may treat you.

Page One - Tear Sheet -

Health Record Allergies:
for (name)
Address:
phone:
Emergency contact name ___________ phone ____________
_____________________________________________

Insurance Contact info:

Insurance info:
_____________________________________________

Medications:

Medication: Dose: How often: Prescribing Physician: Physician phone #


______________________________________________

Physicians:

General Physician: Name: Phone:
Specialist: Name: Phone:
Therapist: Name: Phone:


Hospital Name:
Hospital Address:
Hospital Phone:
_________________________________________________
Medical History:

Allergies: List all allergies on top of this list here and on top of the page as illustrated. Only Allergies should be RED.

Diagnosis:
Physician who diagnosed this condition name and phone:
When:
Where:
Treatments in brief:
Outcome:

Repeat for each diagnosis.
____________________________________________________

Alternative Health Practices: It is essential to include all alternative health methods your are using.


__________________________________________________________

Next blog will be suggestions on how to organize the rest of the Health Record Binder and what records to gather or begin creating.

With our physicians and hospitals becoming more and more strapped for time mistakes happen. A proactive approach is to help insure these mistakes do not occur. A printout of all your essential medical information handed to all professional health providers who treat you saves time all around and insures you delivered accurate information to each health provider. A good time to use this is when you fill out the New Patient form for a new clinic or doctor or emergency room and it is then included right into your medical record for that clinic or doctor.

Part II (Coming Soon) will provide suggestions for organizing the whole medical record and insurance section.

2009 Denver Brain Tumor Walk and Angel Adventure

DENVER
IS
UNITED TO FIGHT BRAIN TUMORS
　
The Denver Brain Tumor Walk and Angel Adventure 2009

Way to Go Denver with a Record Turnout for this most worth cause!!!!! Denver Rocks!!!!!

Well before too much more time passes I had to get photos uploaded from the 2009 Brain Tumor Walk held in Denver on June 6, 2009

The event was held at the beautiful and historic Sloans Lake Park. Hundreds of People turned out to support The National Brain Tumor Society on this bright sunny summer day.

Why does Denver Rock? Denver Rocks because even during these hard economic times the people of Denver Came out in record numbers to support this event.

The participants were offered food, massages, goodie bags, T-Shirts and a Great Time.

It’s never too late for you to show you care follow the link below to The National Brain Tumor Society web site.

Every dollar gets us closer to a cure.
http://www.tbts.org/GeneralMenu/
To see a few pictures from this event click here:

http://s912.photobucket.com/albums/ac322/Msmoge/

Sandy Allen"s friend wrote me yesterday.

I received this wonderful communication from Rita Rose who was/is a very close friend to Sandy Allen. Thank-You Rita for sharing your thoughts and helping to track down the song "Hello, Sandy Allen". For more fascinating reading about Sandy follow the links provided by Rita, I'll paste her email to me below. Your words shed a light on the great sense of humor Sandy had. What a riot, wish I could have been in that pub when Sandy ducked in threw the door. (Wanna see what was so funny? Follow the links Rita left. Thanks again Rita!!!
_____________________________________________________________

Hi,
I read your blog today and tried to post the following response, but the system wouldn't let me. Maybe you could do it for me?
Thanks!
Rita Rosewww.thegiantessbook.com
Hi,Thanks for writing about Sandy. She was my friend for 31 years and a remarkable woman. If you want to check out my book about Sandy, it's called "World's Tallest Woman: The Giantess of Shelbyville High" (Hawthorne Publishing), which recounts her high school years in novel form. No one has written about those years yet and Sandy was very pleased with the book, which I read to her 2 weeks before she died. We had worked on it together for about a year. It's available on Amazon, Barnes & Noble, etc. and from www.hawthornepub.com.A couple of things about your post: "Hello Sandy Allen" is on the Split Enz album "Time and Tide," which is available on CD. Also, since 1976 she only lost her record for one year, in 1982, to Zeng Jinlian of China, who died at age 17 that year. Please check out my book, and my eulogy for Sandy's funeral, at www.thegiantessbook.com.Rita Rose

Reading recomendation

I just finished reading the book "Cast a Giant Shadow" "Sandy Allen the Worlds Tallest Living Woman" written by John Kleiman

Unfortunately Sandy has passed on now but her legacy and life is very well documented. This book is a glimpse of some of the trials and tribulations she faced growing up and in her adult life. One item in this book is her meeting the rock group "The Splitz Enz" they met during a taping of the Tom Snyder show. After their meeting the group was inspired to write "Hello, Sandy Allen" I've looked for a copy of this song, haven't found it yet. I will!
Sandy held the title of Worlds tallest woman since Guinness first recorded her height in 1976.
Boy Sandy fought hard to lead a good life, she worked hard all her life and only let a glimpse of how challenging it was to mearly make it to work. Her courage and tenacity is an example of how we all should conduct our lives. Her desire and passion was to help educate children on how it's ok to be different. To teach acceptance for those who are different. As Sandy said "we are all different in some ways". In today's world her message is more important now than ever.

If you're looking for an awesome book, a quick read pick up this book ISBN 0-75968-105-8
I'm in no way associated with this book in any manner. This is just my recommendation for a book that should be in every families library.

Thank-You Sandy for allowing us peak into your life!!!

Research

Working on a project to gather information from all known giants living and deceased. I decided awhile back to include google maps in this research to pin point birth places. It does look like a few trends and clusters are appearing in the world map. This presents a problem for me as I do not know enough about mathematics to extrapoliate what these percentages are and how to calculate this over population. When I have completed the world map I will publish it on google for now it is still under construction. The trends seemed strong enough at this point that I can support the statement that there does seem to be a link to where a person is born may have some influence environmental my guess on affecting the pituitary gland.
I read a few years back in some medical journal that 25% of the population has a pituitary tumor. Most of those remain inactive. Could there be an environmental issue which activates these tumors? If so could this lead to some intervention through earlier diagnosis?

Thinking out loud again.....

Will work on getting some pics going soon. So much to learn and so little time.

Researching the Web for:

I am involved in researching and learning about pituitary tumors. People afflicted with this diagnosis have a variety of signs and symptoms.

My goal is to build bridges across the world wide web for patients, families and the public. Perhaps with public education on symptoms just one person receives an earlier diagnosis would make all my efforts worth it.

For those who are afflicted with this disorder and they desire a connection with others with this tumor for support, dialogue and information exchange with eachother I hope to help build this bridge.

The symptoms suffered from a pituitary tumor can range the whole gammot of being nearly unnoticable after succesful treatment to extreme life and body changes. Thankfully many times treatments are successful and the symptoms are arrested. Other symptoms can be extremely challenging. Children with a pituitary tumor may experience increased growth hormone causing unnaturally increased and rapid growth. Adults with this tumor may experience increased shoe and glove size. The range of other symptoms seems to be nearly countless, it is my hope that through conversations with patients and their families a support community can be established.

Lofty goals I know........ sigh. Wish me luck!!!