Hypoparathyroidism Association Special Bulletin

October 7, 2009

Dear Friends and Associates,

From time to time we have been asked to assist the medical community in medical research to help them understand Hypoparathyroidism, a rare medical disorder which has invaded our lives. Some of these requests are for patients to participate in a patient study involving new methods for treating the disorder, such as the patient studies being conducted by Columbia University College of Physicians and Surgeons and the National Institutes of Health. Others simply involve completing a questionnaire.

The research, regardless of the method, serve to assist medical researchers in finding better regimes for treating the disorder, and to help them understand the impact the disorder has had on our lives. The Hypoparathyroidism Association has always endorsed the research and encouraged our members to participate.

The new study by the Endocrine Oncology group at Harvard Medical School and the Harvard School of Public Health is one such study and only requires the participants to complete an on-line survey which should only take a few minutes to complete.

While the survey is geared to surgical onset Hypoparathyroidism, your responses can be important. Please complete the survey by clinking on “HERE” below. Your time will be well spent.

James Sanders, President

Hypoparathyroidism Association, Inc.

An Invitation to Participate in an Important Medical Survey

An Endocrine Oncology research group from Harvard Medical School and Harvard School of Public Health is conducting a study that compares the perceptions of hypoparathyroidism from surgeons and preoperative patients with people who actually live with hypoparathyroidism.  

The survey asks for your views about your health as an individual with permanent hypoparathyroidism. Your responses will indicate how you feel and how well you are able to do your usual activities.

There are 28 questions that should take around 9 minutes to complete, including a series of demographic questions at the end. The information you provide is completely private and completely anonymous. There are no questions that involve identification.

To take the survey, you have to click “HERE” .

 Some of the questions are not phrased perfectly, so please help by marking the one box that best describes your answer. 

Thank you for your participation.

Dan Ruan, M.D.

Please email me  and tell me of any new information from your state /province /territory or country on anything you might have heard on any new Protocols that might be beginning in your area or comments you may have, questions ,ideas .

shawnylou@gmail.com

do not forget that James Sanders and Carol Sanders in Idaho have been going through a very hard year with health in their home . carol has been in and out of the hospital . Send Carol good thoughts ,well being,love and many of gods blessings. Carol has supported James through the organization since it inception and she has stood by this disease and her children and learned so much about it,I admire Carol Sanders. She has all 5 adult boys with Familial HPTH and her wonderful Husband who of course has this and as a whole unit they have worked together to find solutions hope and did not sit back to allow this to defeat them.If it had not been for James Sanders in starting the Organization in Idaho Falls ID none of us would have found each other , especially the primaries and familial.

The life of Halla Ruth has been followed since she was a little girl and now her mother has her own None profit organization as Halla grew up and is alive and smiling vibrantly ; because of James .. he made it all possible to bring that story to my heart so I could read that very article when I signed on to his chapter his home base in which I call the MOTHER SHIP.

So here is to James and to Carol . love and many blessings GET WELL SOON CAROL * The lady who stood by the huge mountain and showed many none HPTH folks how to climb it.

Thank you .Shawn L. Blumenfeld /PRESIDENT

HPTH  WASHINGTON STATE

Washington Chapter 

covers Oregon

Alaska and Canada BC

 I  encourage partients and family to file for a 501 (c) 3 and take a wonderful role in a proactive way to help in understanding and learning about the disase.Educate and help the doctors learn more regarding the rare patients they treat with this.

Thank you Shawn L. Blumenfeld  Mount Vernon Washington

Hypoparathyroidism Association to me
show details May 25 (3 days ago) Reply

Hypoparathyroidism Association
May 2009 Newsletter
(3248 Members)
 
Jim's Corner
 
May is almost over with as I write this column. It hasn't snowed since April, which is a good thing, but the wind has been a constant since March. My wife has been out of the hospital for a little over three weeks, but is going to have to go back in on Monday, May 18th for yet another surgery. Her spirits are still high, but her body hasn't been cooperating with her. I firmly believe her outlook on life in general and her positive attitude has kept her alive in the face of adversity which would have left me a pile of weak and quivering JELLO in the corner of a dark room. (Just a brief update on my wife. Her surgery was somewhat successful and she was able to come home the next day. Even though she has a ways to go we are anticipating a good recovery sometime this summer.)
 
Each of us has had to face adversity in our lives. We can allow Hypoparathyroidism to dominate our life, or we can try and do something positive with the disorder. The decision about what to do has always, as it should be, been one that is entirely ours, and whatever outcome we might seek is entirely within our control.
 
Every once in a while I come across something which makes me think how lucky I am and how few, if any, problems, I really have. Nick Vijicic. You can see his story by clicking "HERE", and I can assure you that you will not be disappointed.
 
It is my hope that each of you will finish strong and that you can be happy, in spite of any physical or medical problems you have to face. You can be happy, and you can finish strong. The power to do so is within you.
 
My Story
(By Alex Kuhnle)
 
Hi my name is Alexander Gordon Kuhnle, and I have been living with Hypoparathyroidism all my life. I am 16 years old and I am a junior in High School. My parents found out I had this disease because I had a seizure when I was about one year old. My dad did CPR on me and saved my life because I had stopped breathing. Ever since then I have had very little problems with my disease. (MORE)
 
 
 Gaby's Story
(By Todd and Heather Talarico)
 
Our story about Gaby's 6 years of missed diagnosis, and how you can prevent this from happening.
APS Type 1 is an extremely rare disease, in our case misdiagnosed for many years. We have met a few people that have the disease and many have similar stories. Awareness about this disease and making sure physicians read the signs and do the research is critical. Make sure when tests are run, if something doesn't look right, assume that it isn't correct first before you assume the test had a faulty reading. Find out why from our story. (MORE)
 

From an HPTH Mother,...Terri's Mom
 
I am writing to tell you my story as a mother of a woman who has surgically induced Hypoparathyroidism. First let me say, I am a Senior citizen and retired after working well into my 70s. My daughter, Terri, is my only daughter. She is the second born of 5 children. In years past I have already buried 3 sons…. One shortly after birth from a birth defect, my youngest at 7 years old was struck by a bolt of lightning from out of the blue (this happens in central Florida), and my oldest died of AIDS. So, when told of Terri’s condition and the chance of her early death I was devastated. I didn’t know if I could survive burying a 4th child… and my only daughter. (MORE)
 
 
Another Appeal for Help
 
For several months I have been asking you to help with the content of the monthly newsletters and the web site. For several years most of the content of the Hypoparathyroidism Association was primarily from me, and then I discovered there was a wealth of information, inspiration, humor and motivating stories waiting to be shared with the rest of the members. That content is within you. You can make a difference!
 
It would be a great help to Julie and me if we were to have a ready source of material to choose from each month. Your contribution could have a profound effect on someone else in ways you might never have imagined.
 
A few of you have contributed your own Six-Word Memoir, and several have submitted your personal stories about what you have learned about yourself and from others because of this thing we call "HYPOPARATHYROIDISM." The articles need not be long complicated treatises. A few basic guidlines would be,...
 
1)         Stories should be of interest to the general membership and readership of the Hypoparathyroidism Association. We have over 3250 members in 65 countries, so your potential audience covers many nationalities, religions, cultures, both genders and all ages.
2)         Articles should be between one and two pages in length and deal with just a few key points.
3)         Articles can be serious in nature, or humorous. All of us can use a good laugh at times, especially when it comes to dealing with Hypoparathyroidism.
4)         You only need to share your name and e-mail address if you want to. I do know of several friendships which have developed because of something one member had written and how it had touched another member.
 
We are working on several changes in the web site and in our monthly/quarterly newsletters. We hope you will be a participant in this great adventure. I can assure you your efforts, whatever form they might be, will be worthwhile.
 
 
 
 
 
                                                                                                                                                  
 
         
 
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Hypoparathyroidism Association, Inc. - P.O. Box 2258, Idaho Falls, Idaho, 83403, United States

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WORLD   AWARENESS DAY JANUARY 5, 2008

GO TO THE SIGHT ABOVE***  

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