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, 2015 by Sandra Thomas

Serving the public for 17 years....

What is hemochromatosis in a nutshell? 

Answer:  Hemochromatosis is a genetic condition which causes the body to absorb too much iron from a normal diet.  In other words, iron overload, the opposite of iron deficiency anemia.  Another name for hemochromatosis is "iron overload disease" or "iron storage disease". The medical name is "HFE-associated Hereditary Hemochromatosis". The iron accumulates in vital body organs such as the liver, heart, pancreas and joints until it reaches a toxic level and eventually kills the patient.  Hemochromatosis is easy to treat with bloodletting, identical to blood donation, giving the patient the opportunity to have a normal life span if the condition in diagnosed early.  Because it is genetic, all family members should be genetically tested for HFE-associated Hereditary Hemochromatosis.  Now, you know what hemochromatosis is.  Spread the word, get tested, and get more details on our website!

Listen to the Sandra Thomas Interview!!

Hear Sandra Thomas, President/Founder, American Hemochromatosis Society on
Blog Talk Radio on WRNW1 "Women's Radio Network" on the Lisa Singer Show
who was interviewed
on Monday, November 10th, 2014.

www.wrnw1.com
http://www.wrnw1.com/?s=Sandra+Thomas

@WRNW1Radio
WRNW1 is committed to empower female professionals as

they navigate through the pathways to success!

Got questions?  We've got answers!

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 to iron storage levels and genetic status quickly and privately through

these do it yourself "direct access" companies:

DNA genetic testing/Home test kit/Painless:

Lab: Gene Track (www.hemochromatosisdna.com) DNA Test Kit: $195.00 + 20% discount=$156.00.  No blood or needles involved.  

Toll free number: 1-877-714-6356  (Request discounted price of $156.00) Painless cheek brush kit

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

Call HealthcheckUSA to get name and address of your local lab to be used

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

We recommend Gene Track (www.hemochromatosisDNA.com) for genetic testing. 

Please see their information above.

                               

                                       

If you are searching for a diagnosis (or to rule out hemochromatosis), or monitoring your iron levels, these tests will help you get the answers you need.  AHS would be pleased to discuss your results with you and help you know what questions to ask your doctor.

(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 wish. 

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

It all started 17 years ago...

Josephine Bogie Thomas

She was the inspiration for founding the

American Hemochromatosis Society

Sandra Thomas, Founder/President

Our 17th Anniversary of Service to the Public!!

March 31, 1998 to March 31, 2015

(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 1,950+ visitors who "liked" 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 U.S. 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
  U.S.A.

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.

Thanks to Annie's Mailbox for publishing Sandra Thomas' letter

about hemochromatosis on Sunday, November 2nd, 2014!

We have received calls from all over the USA!!

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 

 

 

 

 

Charles "Chuck" Turner

Friday, July 10, 2015

 

Turner, Jr. Charles J. "Chuck" 64 of Egg Harbor Township, NJ passed away peacefully at home surrounded by his family on July 10, 2015

Born August 31, 1950 in Atlantic City, NJ, Chuck graduated Atlantic City High in 1969. He started his law enforcement career as a Stockton University Police Officer. A graduate of Sea Girt Police Academy, he then joined the Atlantic City Police Department.

After 15 years he was promoted to Sergeant and retired after his 25 years served. Then he joined the Wackenhut Security Dept. at the FAA in Pomona, NJ and was promoted to Supervisor where he also became Union President. Chuck was on the planning board for EHT. He loved the Phillies and Eagles through their good seasons and not so good ones. He enjoyed coaching for his children's softball and baseball teams. He was a Catholic alter boy as a young man.

He is survived by his loving wife of 31 years, Janice (Ciolorito) Turner, his children; Amy (Steve) Massaro, Lorie (John) Walsh, Ashley Turner and Chuck Turner, III. He was a beloved "Pop-Pop to his five grandchildren; Kierstin, Julianna, Justin, Johnny and Kourtney. He is also survived by his mother-in-law, Joyce Ciolorito and his sister, Diane (James) Smith.

Chuck was the ROCK to his family, the most selfless, compassionate, patient, devoted family man that could have ever blessed their lives.Through this trying time, we will find comfort just knowing he will be our angel looking down on us for the rest of our lives.

A Gathering with the family and friends will be held on Thursday, July 16, 2015 from 10am until 12pm at Adams-Perfect Funeral Home 1650 New Rd. Northfield. A Funeral Service will follow at 12pm. Burial will be held at Holy Cross Cemetery, Mays Landing. In lieu of flowers donations may be made to the American Hemochromatosis Society P.O. Box 950871, Lake Mary, FL 32795-0871.

Arrangements entrusted to and condolences may be left for the family at adams-perfect.com.

 

 

 

Edward Strong
June 9, 2015

H. Edward "Ed" Strong, 56, New Vienna, passed away on Tuesday, June 9, 2015 at the Ohio State Medical Center.
He was the owner-manager of Tree Removal Service and an aircraft mechanic with Airborne.
He is survived by his wife, Robin Tilton Strong, and children, Amanda (Craig) Shutts, Thomas (Christina) George, Jennifer (Matt) Terrell, Dustan, Dantan and Brendan Strong and Laura George; grandchildren, Dylan, Kyleigh, Leland, Jacob, Allyson, Riley, Elliot, Sophie, Shelby and Mila. 
There was a celebration of Ed's life on Monday at 2 p.m. at the Littleton Funeral Home, Sabina with Bob Baker officiating. Friends may call from 1pm until time of service. Memorial contributions may be made in Ed's memory to the American Hemochromatosis Society, PO Box 950871, Lake Mary, FL 32795-0871.

 

Paul M. Counahan
June 9, 1953 - May 20, 2015
McCandless, Pennsylvania

 

Age 61, of McCandless Twp., peacefully passed away surrounded by loved ones on Wednesday, May 20, 2015. Beloved husband for 39 years of Maura (Burwinkel); proud and loving father of Michael C. (Nicki), Mini Maura, and Jack Counahan; caring brother of Kathy Thomas (Kevin) and Tammy Hunter (Keith); loving uncle of James Paul, Kelsey, and MacKenzie; also survived by many loving friends and relatives. Friends received Thursday 6-8 p.m. and Friday 2-4 and 6-8 p.m. at DEVLIN FUNERAL HOME, INC., 806 Perry Hwy., Ross Twp. A Mass of Christian Burial will be held in St. Teresa of Avila Church on Saturday at 12:30 p.m. Paul enjoyed a 37 year career in the heavy equipment industry, working for Caterpillar, Inc., Beckwith Machinery, and Cleveland Brothers. The family would like to thank the staff at UPMC Shadyside for their support and care. In lieu of flowers, memorial contributions may be made to the American Hemochromatosis Society, P.O. Box 950871, Lake Mary, FL 32795-0871.

 

Douglas Keith Bloetscher

October 8, 1925--March 30, 2015

Douglas Keith Bloetscher

 

Bloetscher, Douglas Keith, age 89 of Lake Columbia (formerly of Farmington Hills) passed away March 30, 2015 at home under the loving care of his family. He was born in Detroit on October 8, 1925 to Frederick and Rosa (Flaishans) Bloetscher. He served his country proudly in the U.S. Air Force during WWII. He was a graduate of Cass Tech High School and Lawrence Technological University(1949) where he received his degree in Architecture. In his youth, Douglas was an avid baseball player and later in life took up painting. On August 27, 1948 Douglas married Shirley Thomas and she survives.

In addition to his wife of 66 years, Douglas is survived by his children: Douglas (Ann) Bloetscher and Susan (Chris) Wozniak; Grandchildren: Sarah, Christopher, Stephen, Alyssa, Kristen and Lauren: Great Granddaughter: Adrianna. He was preceded in death by his brother Frederick, and his sisters Marge and Rosemary.

 

George H. Trudel

December 29, 2014

 

George H. Trudel, 69, of Eliot, ME, formerly of Ipswich and Scottsdale, AZ, died December 29, 2014 at Portsmouth Regional Hospital in New Hampshire. Born in Ipswich on May 16, 1945, son of John and Ellen (Nugent) Trudel of Meetinghouse Green, Ipswich, he graduated from Ipswich High School, class of 1963. Since high school, he has worked and traveled throughout the United States while being employed in the nuclear power and transportation service industries. He is survived by his son, John O. Trudel and his wife Amy and their daughter Scarlett of La Porte, TX; seven siblings, brothers John Trudel of Byfield and Thomas Trudel of Rowley; sisters Mary Young of Merrimac, Sheila Comeau of Newburyport; Theresa Matregrano of Rumney, NH; Ellen Tobiasz of Eliot, ME; and Christine Trudel of Scottsdale, AZ, and nineteen nieces and nephews. His funeral service will be held at 10 am Saturday in the Whittier-Porter Funeral Home, 6 High St., Ipswich followed by interment in the Highland Cemetery, Ipswich. Family and friends are respectfully welcomed. Visiting hours will be Friday 4 to 8 pm. In lieu of flowers memorial contributions in his name may be made to American Hemochromatosis Society ( http://americanhs.org ) of Lake Mary, Florida. For directions or to leave a condolence please visit www.whittier-porter.com
- See more at: http://www.legacy.com/obituaries/wickedlocal-ipswich/obituary.aspx?pid=173672161#sthash.TYfPyzuB.dpuf

Bernard B. "Brian" Gillespie

October 21, 2014

 





Gillespie --- Bernard B. “Brian” of West Roxbury, Suddenly October 21, 2014. Age 62. Beloved son of the late Bernard “Barney” and Cecilia F. “Sheila” (Kearney) Gillespie. Loving brother of Mary Ellen McPhee and her husband Joseph of Northborough, Philip and his wife Maura of Dedham,Cecelia “Fran” Saroglou and her husband George of Medfield, Patrick and his wife Ellen of West Roxbury and the late John Michael Gillespie. Devoted uncle of Bernie and Lori Saroglou, Sheila and Jason Blydenburgh, Bridget Gillespie, Meghan Gillespie, Michaela Gillespie and Emma Gillespie. Great Uncle of Tyler, Camryn and Elizabeth.


Funeral from the Robert J. Lawler and Crosby Funeral Home 1803 Centre St., West Roxbury, on Monday, Oct. 27, at 10:00 am. A Mass of Christian Burial will be celebrated in St. Theresa of Avila Church at 11:30am. Relatives and friends are invited to attend. Interment St. Joseph Cemetery. 

Member of Local 275 Carpenters Union.

In lieu of flowers donations may be made in Brian’s name to www.americanhs.org American Hemochromatosis Society “AHS”, PO Box 950871, Lake Mary, FL 32795-0871.






 

 

 

(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 8 Years Later...August 27, 2007 to August 27, 2015

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

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

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 through local labs (Lab Corps). To learn more about HH testing you may go to their menu on 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 (or rule out) 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 $156.00 (depending on which lab you use) and the hemochromatosis blood panel is about $60 depending on the local lab that you use to draw the blood.  Genetic testing includes three gene mutations for HH including: cys282, his63, and S65D, contact:: 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 hereditary 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. 

© 2015 American Hemochromatosis Society (TM)

This site was last updated on August 23, 2015