The AHS is now registered with several United Way chapters. If you donate to the United Way, please make AHS your charity of choice.

 

 

 

 


A very special day in the history of the American Hemochromatosis Society (AHS)

Founded March 31, 1998 to March 31, 2014 by Sandra Thomas

Serving the public for 16 years....

Before you read anything else on this website...

Here's Bottom Line Information to save you time and money:

Want answers now? Tired of wondering if you or a loved one has hereditary hemochromatosis?

Find answers quickly and privately through these "direct access" companies:

DNA genetic testing/Home test kits/Painless:

Best bargain: www.23andme.com ($99/tests three HH mutations using saliva sample)

Reports raw data with no interpretation of results/Tests for three mutations.

Gene Track (www.hemochromatosisdna.com) $195.00 + 20% discount=$156.00. 

Toll free number: 1-877-714-6356  (Request discount) Painless cheek brush kit

Results are sent by snail mail/email in 3 to 5 days/Tests for three mutations

Iron storage levels (serum iron, TIBC, & serum ferritin):

(Used for diagnosis of hemochromatosis or monitoring the diagnosed patient)

HealthCheckUSA (www.healthcheckusa.com) Toll free number: 1-800-929-2044.

No doctor's order needed/ you use a local lab /needle draw from arm=$60.00

**Please note that HealthCheckUSA no longer offers the HFE mutation DNA test kit

 

If you are searching for a diagnosis (or to rule out hemochromatosis), these tests will

help you get the answers you need.  AHS would be pleased to discuss your results with you.

(AHS does not receive any funding from these companies for referring patients to them).

Please note that these labs are not a substitute for professional medical care but can provide a quick, confidential, and accurate assessment of your iron storage levels and

your DNA genetic status which you can share with your doctor. 

If you have any questions about these labs please call AHS at: 407-829-4488. 

It all started 16 years ago...

Josephine Bogie Thomas

She was the inspiration for founding the

American Hemochromatosis Society

Sandra Thomas, Founder/President

Our 16th Anniversary of Service to the Public!!

March 31, 1998 to March 31, 2014

(See the President's Message at the bottom

of the page for a history of AHS)

Thank you for putting your trust in the American Hemochromatosis Society (AHS)

Visit us (and "Like" us) on Facebook!

Join the 1,300+ visitors to our page on Facebook!

www.facebook.com/HereditaryHemochromatosis

AHS New Address!!:

(In the "old days" (circa 1998), the American Hemochromatosis Society (AHS) received and sent out a lot of mail. Now, with the Internet and Facebook, we get few requests for information by mail, and we rarely use the postal service. Nevertheless, we do have an address, and that address has now been changed to:

American Hemochromatosis Society (AHS)
P.O. Box 950871
Lake Mary, Florida 32795-0871


Most communcation with our society is through email, (mail@americanhs.org), or facebook (www.facebook.com/HereditaryHemochromatosis), or telephone, 407-829-4488.

We're here to help in any way we can.

Take a trip down memory lane... Old AHS Archives!!

 

In Loving Memory...

 

The American Hemochromatosis Society extends its sincere sympathy

to the family, friends, and co-workers of 

SCOTT DALITZKY

1960 - September 1, 2014

Dalitzky, Scott 1960-2014 Dalton-Scott David Dalitzky, 53, of Newton Center, formerly of Longmeadow, died Monday September 1st at Massachusetts General Hospital in Boston after a short illness. He is survived by his son, Eric Michael Dalitzky, of Newton Center, MA, his parents, Dr. Milton and Martha (Okun) Dalitzky, of Dalton, MA and Wellington, FL, his sister and brother-in-law, Nancy and Greg Master of Arnold, MD, and his former wife, Carol (Abramowitz) Dalitzky of Newton Center, MA. He is also survived by his uncles, cousins and many dear friends. He attended Longmeadow Schools and was a graduate of Northfield Mt. Hermon School. He received a BA in Economics from University of Vermont and an MBA in Marketing from Goizueta Business School, Emory University, Atlanta, GA. He worked as a Business Manager for the Gillette Co., Boston, MA, Product Manager for Lever Brothers-Unilever, NY, and Sara Lee Corporation, Winston Salem, NC. He also served as a marketing consultant for various companies including Polaroid, Power Object and Mt Vernon Strategies. A graveside service was held at the Beth El Cemetery, 366 Kings Highway, West Springfield, MA on Thursday September 4th at 11:00 AM.

**************************************************************************

Feature Image

 

Terrance P.  Lyons, 74 - May 18, 1939 to February 22, 2014

Terrance Patrick Lyons, 74, of Whitney, TX, originally of North Platte, passed away Saturday, Feb. 22, 2014, at Town Hall Estates.  Memorial services took place at 2 p.m. on Friday, Feb. 28, at Marshall and Marshall Funeral Directors Chapel at Whitney with the Rev. Ouseph Thekkumthala of Our Lady of Mercy Catholic Church officiating. Committal services with military honors were conducted at a later date at Dallas-Fort Worth National Cemetery.


Lyons was born May 18, 1939, at North Platte, to Michael Joseph and Verda (Adney) Lyons. Following his high school career, he served 10½ years with the U.S. Navy.
On March 5, 1964, he was united in marriage to Sandra Greene at Omaha. The couple were married for 51 years. Lyons and his wife resided the past 11 years in the Clifton/Whitney area after moving from Leander where they owned Lyons Quarter Horses. He was a member of the U.S. Coast Guard Auxiliary for five years.
Survivors include: his wife, Sandy Lyons of Whitney; a son, Jim Lyons of Fort Worth, TX; daughters, ”Brenda Lyons of Fort Worth and Debbie McKee of San Morcos; a brother, Tom Lyons of Clinton, IA; his sister, Marg Dillon of Gothenburg; grandsons, Eric McKee of San Marcos, Kevin (Sarah) Lyons of Fort Worth; great-grandsons, Ben and Will Lyons.

 

(See the full obituaries in the Memorial Photo Gallery)

International BioIron Society(IBIS)

For more information: www.bioiron.org   

Josephine Bogie Thomas (left) & her daughter, Sandra Thomas, on the

balcony of their apartment in North Hills, Pittsburgh, Pennsylvania

in November 1998, six months before Josephine died from hereditary hemochromatosis on May 13th, 1999. 

AHS Remembers 7 Years Later...August 27, 2007 to August 27, 2014

Joseph Burghard Thomas

Board member and major benefactor of the American Hemochromatosis Society

October 5, 1914 to August 27th, 2007

Dad, you are missed every day.  You did so much to help the cause for awareness of

hereditary hemochromatosis, the disease which took your dear wife, Josephine, from you.  You cared for her tenderly, and stood by her without exception, tirelessly,

patiently, you were there for her from diagnosis in 1983 to her death in 1999.  You set

a wonderful example of devotion and dedication.  One which I easily and gladly followed when it was your turn to face the final chapter of your life.  You and mom were the best, and are dearly missed.  Thank you for all of the timeless life lessons you taught me.

Love,  Sandra

 

(Joe was the father of AHS president and founder, Sandra Thomas and husband of 59 years to

Josephine Bogie Thomas, inspiration for the founding of this organization)

Joseph Burghard Thomas Obituary

See In Memoriam tribute in Orlando Sentinel on August 27, 2013

Sandra Thomas and her father, Joe B. Thomas

Unraveling Your DNA's Secrets

 

Books on Hemochromatosis....

Guide to Hemochromatosis

Guide to Hemochromatosis, which is chock full of important information about hemochromatosis, can be ordered through www.amazon.com  or any major book store, or go to: www.irondisorders.org

 

MediFocus Guidebook on Hereditary Hemochromatosis

Medifocus has published an excellent rescource and information guide for patients and families concerning Hereditary Hemochromatosis.

 

 

 

 

Visit the AHS Neonatal Hemochromatosis Information Center (NH) Site

 "Dylan" (left) has Neonatal Hemochromatosis (NH).  AHS sponsors a web site for this rare newborn iron disease.  Learn more about NH in newborns and the exciting new treatment which offers new hope for pregnant women who have already had an NH baby in the past.  

If you have an NH baby, please email or call us at 407-829-4488 so you aren't going through this experience alone.  There are others who have been through this same experience and doctors who are eager to help in any way they can.  Please note:  If you have hereditary hemochromatosis and are pregnant, you will not have an NH baby.  If you have hereditary hemochromatosis and plan to have children, you will not have an NH baby because of that diagnosis.  NH is a separate condition which is not genetic like hereditary hemochromatosis (HH).

You can also find us on Facebook.

 

Visit our web site for Neonatal Hemochromatosis (NH) at:

www.neonatalhemochromatosis.org


Find a physician! See our new updated "Expert Physician & Referral Page"!  Or, recommend your doctor for the AHS referral list.  Click here to see the physician map!


If You Love Raw Oysters and have HH....read this!                                                                          

Raw Oysters can be deadly for hemochromatosis patients with liver damage. HH patients should never eat raw oysters!

 

 

Check out the YouTube video created by the Canadian Hemochromatosis Society:

www.youtube.com/watch?v=UeRr-S2aWrY

 

 

Does your blood bank use Hemochromatosis blood as donor blood?

The FDA has now posted a list of blood banks that use hemochrmatosis patients' blood as donor blood because of the tireless work of our Executive Director, David Snyder.  Please click on "More Info" to see the FDA list.

www.fda.gov/BiologicsBloodVaccines/BloodBloodProducts/RegulationoftheBloodSupply/Variances/ucm164649.htm

 

The FDA approved the use of iron overload, Hemochromatosis blood as donor blood in 1999 and allows Hemochromatosis patients to get treated for free. Click here to learn how to help your local blood bank to participate!

 

Check out this article on the history of bloodletting written by an HH patient!:

http://www.medtech.edu/blog/the-history-progression-and-modern-stance-on-bloodletting

 

"But, what should I eat?

Do you have questions about diet and hemochromatosis?

 

                        

 

We hear this question almost every day from patients and their family members all over the country.   Although diet is usually not used to control or manage hemochromatosis, there can be important things to know about what to eat or not eat, especially if you have an advanced stage of HH..  If you want more information about diet & hemochromatosis, plus recipes, we recommend a new book, The Hemochromatosis Cookbook by Cheryl Garrison.

 

Thinking about having a liver biopsy?  FerriScan could be your non-invasive alternative!  Read more about this new technology and where you can find it at:

www.resonancehealth.com

 

Get tested!! The discovery of the HFE gene mutation was announced in August 1996.  This was a huge breakthrough in the growing and expanding field of hereditary hemochromatosis (HH). Above, David Snyder, AHS vice president and Sandra Thomas, AHS president, demonstrate how to painlessly use the DNA cheek swab stick to collect a sample to send to the lab.  Results are ready in just a few days.  A commercial test has been available since 1997 and direct access testing (DAT) has been available for several years, yet most patients do not know that they can test themselves for hereditary hemochromatosis.  To order a painless, DNA test kit call Gene Track at: 1-877-714-6356 or go to their web site for more information on Hemochromatosis DNA tests at: www.hemochromatosisdna.com

Other labs which offer DNA testing are: www.23andme.com

--------------------------------------------

American Hemochromatosis Society (AHS) has served the American public for 16 years:

March 31, 1998/March 31, 2014

Thank you for putting your trust in AHS!!

Sandra Thomas & David Snyder of AHS, with the late, Joe B. Thomas (seated), former board member, observe the 8th anniversary of AHS while displaying a framed medical feature article on hereditary hemochromatosis from the January 2004 issue of Hepatitis Magazine.

-----------------------

"Medicine for the Public" Lecture about
Hereditary Hemochromatosis

Given by: Dr. Susan Leitman on Tuesday, October 21, 2003 at NIH . Click here to see the video.

----------------------------

Before you see your doctor to find out whether or not you have hemochromatosis, please know that a "formal" diagnosis of hemochromatosis on your medical records may put you at risk of being denied health insurance, life insurance, and long term care insurance in the future.  Why?  Because the insurance industry doesn't like iron overload, aka, "hereditary hemochromatosis" and what it can do to the body and it certainly doesn't like the kind of medical bills that it can create for the patient.  The insurance industry considers hemochromatosis to be a potentially fatal disease which will cost them a lot of money before the patient dies.  Of course, hemochromatosis, when diagnosed early, does not cause organ damage or death, and the patient will have a normal life span.  In addition, the patient is not going to cost the insurance company a lot of money.  The problem is that the insurance industry is behind the times when it comes to judging insurability of a HFE-associated hereditary hemochromatosis patient.   What can you do?  If you think you are at risk for having hemochromatosis, you must be tested.  However, you can easily test yourself to find out if there is indeed any genetic risk.  How can you do that?  By contacting HealthCheckUSA based in San Antonio, Texas, which allows patients to order their own tests for hemochromatosis. To learn more about HH testing you may go to their web site: www.healthcheckusa.com The toll free number is: 1-800-929-2044.) Ask for the hemochromatosis iron panel and DNA test, which includes percent of saturation and serum ferritin, two of the main blood tests used to confirm a diagnosis.  Many patients have used this testing method known as "DAT" or direct access testing, which keeps the results private, confidential and for your eyes only, thusly protecting your insurability.  The DNA test kit is about $99.00-$156.00 (depending on which lab you use) and the hemochromatosis blood panel is about $60 to $70 depending on the local lab that you use to draw the blood. If you wish to be tested for three gene mutations for HH including: cys282, his63, and s65d, contact:: www.23andme.com  This company offers raw data but not interpretation.  Please note that AHS does not, nor ever has, received any monetary compensation for referring patients to this, or any, lab. Results are sent directly to the patient; and based on your test results, you can decide how to proceed.  Early stage cases may only need to donate blood from time to time, other cases, which are more advanced, will need to be evaluated by a medical expert in the field of hemochromatosis.  Those patients with advanced stages of hemochromatosis and associated symptoms and conditions, should wear a "medic alert" bracelet at all times so that medical personnel will know they have HH.

Patients requiring an expert in hemochromatosis should click: Here

 

Sandra Thomas, President, American Hemochromatosis Society

 

A tribute to Ann Landers who helped the Hereditary Hemochromatosis cause through her syndicated column...

Ann Landers' column featured three different letters on iron overload disease, hemochromatosis written by Sandra Thomas, President and Founder of AHS--the most recent letter being published on July 1, 2000. Sadly, Ann passed away on June 22nd, 2002 at the age of 83.  By giving space in her column to HH, she reached millions who had never heard of or read the word--hemochromatosis. She saved countless lives that would have otherwise been lost to this disease.  Thank you, Ann, on behalf of the many people whose lives you saved through your newspaper column. Click Here to read it!

A Message from AHS President Sandra Thomas

Welcome to our web site which features information on HFE associated hereditary hemochromatosis.  We are here to help you in any way we can...by giving you the basics of hemochromatosis and presenting a user friendly web site to help you find the information you need to save your life and the lives of those you love.

Click here for for the latest letter from Sandra . . .

 

 

 

We need you!

Has this web site helped you in your search for information on hemochromatosis?   Has a phone call to our office, a visit to our web site, helped you get a diagnosis of hemochromatosis for yourself or a loved one?  If so, please help us to carry on our quest to educate the public and medical community about HFE-associated hereditary hemochromatosis.  The American Hemochromatosis Society (AHS) is a non profit 501(c)3 health organization dedicated to increasing awareness about HH.  You may make a tax deductable donation by check or money order through the mail. Donations may be made to honor the memory of a friend or loved one or to honor someone who is living, such as the doctor who diagnosed you and saved your life from hemochromatosis.  Remember the American Hemochromatosis Society in your will or trust.  Please mail your checks or money orders to: AHS, P.O.Box 950871, Lake Mary, FL  32795-0871.  Help us to save and help others through your generous giving. 

© 2014 American Hemochromatosis Society (TM)

This site was last updated on September 16, 2014