kirk - 11/28/00 14:00:56
My Email:kjcannon@tir.com
City: mt. morris
State: michigan

Comments:
keeping up to date

David W. Chambers - 11/24/00 22:07:11
My Email:C208@yahoo.com
City: Wichita
State: Ks.27213

Comments:
I am alpha 1

Kay Kinsel - 11/10/00 01:53:42
My Email:kaykinsel@aol.com
City: Laramie
State: WY

Comments:
Diagnosed six years. Active in the Colorado and Wyoming Support Groups.

Camilla Adams - 11/03/00 18:28:18
My Email:bobandme@cvc.net
City: Sprague River
State: Oregon

Comments:
Just been diagnosed!

MICHELLE RAYBURN - 10/19/00 22:37:17
My Email:MLTRAYBURN@YAHOO.OCM
City: ROCK SPRINGS
State: WYOMING

Comments:
JUST CURIOUS I HAD AUNT PASS AWAY LAST YEAR FROM THIS.

Phyllis Morrow - 10/15/00 23:50:28
My Email:qhlady@dashlink.com
City: Belton
State: TX

Comments:
If anyone can help me, I need help.. my doctor did a blood test and said something was wrong with my liver.. she said through the blood test that something was out of the roof.. I am in the dark about what it could possibly be, she didn't say.. can anyone give me a clue? I don't smoke or drink, I do drink Coke. that is my only vice.. if you can please email me, I NEED HELP.. oh yea, she went on vacation, I have to wait.. qhlady@dashlink.com thanks..

Hutter - 09/19/00 00:08:10

Comments:


barbara holland - 09/15/00 21:22:32
My Email:barbara.holland@netzero.net
City: austin
State: texas

Comments:
Lost my mother-in-law in 1968. Lost my daughter in 1988. Lost my husband in 1995. All were Alpha1 patients. The first time I heard about Alpha1 was in the early 1980's. In February of 1988 my daughter was approved for infusion treatments. She was also on he list for a heart/lung transplant. She had two infusions before her heart/lung transplant June 1,1988. Passed away June 22,1988. My other daughter is also an Alpha1 patient.(Anyone in the Austin area, please contact me)

barbara holland - 09/15/00 20:34:33
My Email:barbara.holland@netzero.net
City: austin
State: tx. 78757

Comments:
none at this time

Dianna Pietrzykowski - 08/30/00 01:47:57
My Email:www.piertz @uswest.net
City: Vancouver
State: washington

Comments:
My Mother Uncle and Aunt all have Alpha 1. My grandmother and her husband both had Alpha 1. My uncle had a lung transplant and my aunt is on the waiting list for a transplant. My Mother, unfortunately passed away this past March with Alpha 1 and pneum nia along with osteoperousis. As I understand this all goes along with Alpha 1 in the later stages. I was checked for Alpha 1 after my mom died. I am negative. But, I'm pretty sure my younger brother has it. I am doing a report for school on this dise se and would like alot more information about this and what else can be done. Please help me find out all I can about Alpha 1. Thanks Dianna

Dianna Pietrzykowski - 08/30/00 01:44:10
My Email:www.piertz @uswest.net
City: Vancouver
State: washington

Comments:
My Mother Uncle and Aunt all have Alpha1. My grandmother and her husband both had Alpha 1. My uncle had a lung transplant and my aunt is on the waiting list for a transplant. My Mother, unfortunately passed away this past March with Alpha 1 and pneumon a along with osteoperousis. As I understand this all goes along with Alpha 1 in the later stages. I was checked for Alpha 1 after my mom died. I am negative. But, I'm pretty sure my younger brother has it. I am doing a report for school on this diseas and would like alot more information about this and what else can be done.

Cheyenne - 08/08/00 05:15:22
My Email:cheycryingwolf@aol.com
City: Eau Claire
State: Wisconsin

Comments:
LOOKING FOR RELATIVES!!! My father passed away from Alpha-1 this past January. He was adopted from HOPE COTTAGE, Dallas Texas in end of 1939 or beginning of 1940. He was born 10-17-39 and lived in Winnsboro,Texas his whole life. If he had siblings, they w uld have had this disease as well. PLEASE, anyone with information to help me, contact me as soon as possible. Thank you very much.

Ed Chaplin - 08/07/00 05:51:52
My Email:ejc3@swbell.net
City: houston
State: Texas

Comments:


Larry Ehrlund - 07/31/00 03:15:58
My Email:texvet@texas.net
City: San Antonio
State: Texas

Comments:
Newly diagnosed with cirrhosis.

amy - 07/21/00 15:12:14
My Email:crazygirl9364@hotmail.com
City: brenham
State: texas

Comments:


- 07/16/00 12:48:15

Comments:


PJ COOK - 07/10/00 00:41:18
My Email:pjc2cor318@aol.com
State: MD

Comments:
IS THERE ANYONE OUT THERE FROM MARYLAND. I AM LOOKING FOR A SUPPORT NEAR MY AREA. MY FATHER HAS ALPHA1 AND HAS BEEN RECEIVING PROLASTIN TREATMENT FOR SEVERAL YEARS. THE MAN SHOULD HAVE BEEN DEAD YEARS AGO, BUT BY THE GRACE OF GOD, HE IS STILL HERE WITH US, AND VERY ACTIVE. MY SISTER AND I HAVE BOTH BEEN DIAGNOSED WITH IT, AND MY DAUGHTER HAS JUST BEEN DIAGNOSED WITH IT. THANK YOU FOR ANY HELP.

Coralina Risico - 06/20/00 02:01:15
My Email:corisa@worlldnet.att.net
City: Long Island City
State: New York

Comments:
I was diagnosed with the disease 7 years ago. I am 61 years old and still work. I do not give up and I am always reading and finding ways to help myself. My doctor is very good but there is so much he can do. Right now I'm interested in breathing techniques. I do find that certain breathing execercises do help to control the out of breath feeling. If you have this disease please do not give up and try to help yourself. Read all what you can and use the things that you think will work for you.

chandra alford - 06/04/00 00:31:32
My Email:chandra@midsouth.com
City: houston
State: mississippi

Comments:


Inge-Lise Jørgensen - 05/24/00 20:25:39
My Email:Dan-M-J@mail.tele.dk
City: Køge
State: Denmark, Europe

Comments:
Hej, my husband has had Alfa-1-antitrypsin since he was 30 years old, he is now 44 years old. Althoug his lungcapacity is very low, he has managed to keep his (and) my spirits up, by his unique talent to change his way of life in accordance with the illne s. Although this is a very serious illness for which there is no cure, we still have a meaningful and loving life together, and have learned more about appreciating life than most well peole do. We are determined to live life to the fullest together and f ght this as long as possible together. So our advice is Please dont let the sickness take over your lives, but try to live the best lives you can with the sickness. God luck and dont give up hope. Love Inge-Lise

donal bell - 05/04/00 09:43:32
My URL:http://donal bell@eircom.net
City: Galway
State: Rep of Ireland

Comments:


g.laidlaw - 04/25/00 01:09:07
My Email:Georgel@idirect.com
City: toronto
State: ontario can.

Comments:


Debbie Wood - 04/17/00 00:32:21
My Email:dawood@ktsnet.com
City: Center
State: Texas

Comments:
My boyfriend John is an ALpha. He takes Prolastin every Thursday and rehabs every other day. He asked me the other day..why would a woman like you love a man that is sick and then he starts telling me AGAIN..how much trouble he will be...I simply say...I oved the man before he got sick..not after. You do not toss away your dreams just because something unforseen comes up. We are going to fight this together. Oh by the way..he lives in Indiana..and I am in Texas..we will have be together 2 years on June 11 2000 and have been thru this since he was diagnosed!

jerry b. - 04/16/00 16:16:28
My Email:jb_bristol@yahoo.com
City: baraboo
State: wisconsin

Comments:
i found out 8 years ago i have alpha1, also. And sadly i lost my sister to this disease 2 1/2 years ago at age 47, and my younger brother is 37 and very sick with the disease, he is also not able to work anymore. i am 39 and i am still able to work, i do ot smoke, and i try to take care of myself. i dont know much about this disease, and the doctors in my area dont either. i need anyone that can send me any information to help me out. i dont know how long my younger brother has to live, he is taking lots f medications and having to be on oxygen and not doing so good. i want to do anything i can to help him and myself out. please email me anytime with any information you have. god bless all of you..

Linda Smith - 04/14/00 12:11:58
My Email:lindas@liljasper.com
City: Rensselaer
State: Indiana

Comments:
I am a registered nurse for a local home health care agency and am looking for information on Alpha 1 Anti-Trypsin Deficiency to become better able to provide support to one of our patients with this disease.

Kelly Cooper - 04/14/00 03:54:58
City: Hastings
State: N.Z

Comments:
I was diagnosed with alpha 1 antitrypsin earlier this year, As you can understand I'm devistated. I thank the doctor who put this information on the internet. I was not really aware of what it was exactly, even though my Mum passed away from this disease. br>
Marquette Haynes - 04/13/00 07:44:08
My Email:skylarsplace@hotmail.com
City: Fort Campbell
State: ky.

Comments:
Hello my name is Marquette I have a 20 month daughter with A1AD. She's waiting for a liver transplant. I would be happy to share all I know with you. Or try to call the Alpha 1 Association at 1 800-521-3025. They are great, they'll not only give out free nformation but will connect you with others with the disease. Please feel free to contact me. God Bless

peggy - 04/07/00 08:42:35
My Email:lydiasamwebtv.net
City: Athens
State: Texas

Comments:
My father passed away 04-01-2000. He has been sick with this illness for the past 20 years. I have learned that this disease can destroy a family as well as a loved one.

peggy - 04/07/00 08:41:09
My Email:lydiasamwebtv.net
City: Athens
State: Texas

Comments:
My father passed away 04-01-2000. He has been sick with this illness for the past 20 years. I have learned that this disease can destroy a family as well as a loved one.

peggy - 04/07/00 07:47:32
My Email:lydiasam@webtv.net
City: Athens
State: Texas

Comments:


ROXANNE BROOKS - 03/31/00 18:20:54
My Email:HOTROX20@YAHOO.COM
City: SAVAGE
State: MD

Comments:
MY EX HUSBAND HAS JUST FOUND THAT HE HAS ALPHAONE WE DONT KNOW MUCH IMFORMATION BUT HE WILL DIE SOON. WE HAVE TWIN GIRLS WHO QARE WAITING TO BE TESTED IF ANYBODY HAS ANY IMFORMATION PLEASE EMAIL ME THANKS

LOUISE - 03/31/00 16:31:55
My Email:charlie@sprint.ca
City: hamilton
State: ontario

Comments:


EMILY ALGEIER - 03/30/00 21:09:49
My Email:MARKESTIA@YAHOO.COM
City: SAVAGE
State: MD

Comments:
I NEED IMFORMATION FAST I KNOW NOTHING

- 03/28/00 09:57:49

Comments:


kristin collins - 03/24/00 15:34:01
City: vicksburg
State: mississippi

Comments:


Glander Pressley - 03/21/00 18:08:59
State: South Carolina

Comments:


Sue Collins - 03/13/00 19:32:50
My Email:kscollins@tcia.net
City: Hillsville
State: Va. 24343

Comments:


Jeanine Good - 03/08/00 14:15:15
My Email:thegoods@harlannet.com
City: Harlan
State: Iowa

Comments:
I have a 4 year old son with Alpha 1 antitrypsin defiency

reynold rachman - 03/06/00 10:26:26
My URL:http://www.yahoo.com
My Email:reynold_id@yahoo.com
City: Banjarmasin
State: indonesia

Comments:
i want t learn more about alpha 1 antitrypsine

manz - 03/03/00 20:30:27
State: NE

Comments:
I was here.

Crystal Twite - 03/03/00 14:48:17
My Email:crystaltwite@hotmail.com
City: Lanesboro
State: Minnesota

Comments:


E. Thomas - 02/29/00 04:15:35
My Email:Etomtex2@aol.com
City: Lorena
State: Tx

Comments:


Lou Glenn - 02/28/00 19:31:44
My Email:alpha1-ga@mindspring.com
City: Atlanta
State: Georgia

Comments:
WOW ! ! Very nice; who did it, and I'd like to speak with them. Lou

jim Quinn - 02/25/00 01:54:03
My Email:jvquinn1@uswest.net
City: Lakewood
State: colorado

Comments:


Terry Young - 02/24/00 13:56:11
My Email:tlyoung@alphanet.org
City: St. Augustine
State: FL

Comments:
My first visit to this site. Good job!

Lynn Lawrence - 02/15/00 09:25:12
My Email:enjnlife1@aol.com
City: Surrey
State: British Columbia

Comments:


Gladys Wylie - 02/14/00 22:48:31
My Email:agmwylie@aol.com
City: Henderson
State: TX

Comments:
I'm looking for help in finding a support group in the Henderson or Houston area of Texas. I lost my husband to this last October.

Dianne Tosi - 02/09/00 21:51:14
My Email:sagittariustosi@yahoo.com
City: Moore
State: South Carolina

Comments:
In 1978 our son was diagnosed with A1AD. At that time there were no support groups or individuals we could talk to. He died nine months later of acute liver cirrhosis. My husband and I are both MZ's. My husband and I are both 51 years of age and are no smokers and nondrinkers. I was shocked at the number of individuals with this condition. If anyone out there has any information regarding risks to individuals in the carrier state please forward them on to me. Thanks - My greatest hope for the future s that this horrible condition can be eradicated in future generations.

regina vey - 02/07/00 22:03:17
My Email:volvoqueen@hotmail.com
City: grand falls. Newfoundland
State: Canada

Comments:
My brother was diagosed with alph1antitrypsin in Dec. This is a new disease to us. None of us have ever heard of this before. Rod is having a very hard time with this. The Dr has taken him off of work. He was a long haul trucker. Time is very long for him as well. He is waiting to hear about a lung transplant. He lives 2000 miles from me and I feel so helpless. He doesn't have a computer so I'm always trying to find out about any info I can for him. Then I copy it & send it to him through mail. We have 8 brothers a d sisters and so far he's the only one with this awful disease. We are all waiting for results. I had hoped for a support group in his area of Cardinal, Ont. but there are none. Any info would be appreciated so much. Thank You.

Sam Bell - 02/06/00 11:19:06
My Email:babs@wf.quik.com
City: Nocona
State: Texas

Comments:
I'm 54 dignosed in 1998 . Also have a younger brother with it.

- 02/02/00 11:09:03

Comments:


Jack Thompson - 01/27/00 14:30:35
My Email:bearfan1@indianvalley.com
City: Somonauk
State: Illinois

Comments:
I have a neighbor, and close friend who has been diagnosed with Alpha-1. He has only 30% lung capacity left. I am trying to find any information on treatment (lung transplants, prolastin, etc.) to help their family at this time of pain and concern.

Edward Terry - 01/20/00 22:42:52
My Email:edterry@MEANS.com
City: Pelican Rapids
State: MN

Comments:


Leonard Jeffreys - 01/20/00 17:30:42
My Email:lenleahj@granbury.com
City: Granbury
State: Texas

Comments:
Leonard was diagnosed Alpha 1 in Nov 1998. We have visited the UT Health and Research Center in Tyler Tx on several occasions. Recently, Leonard participated in a study of an inhaled product at UT Health Center in Tyler. Dr. James Stocks is the physici n in charge of the research programs at UT. Our internist here in Granbury was concerned because of a family history of emphysema, as a brother and father both died young with lung problems. A matter of interest is the family immigrated to this country f om the southern part of Wales. It is reported that Alpha 1 came to this country from the northern part of Europe. Leonard is very fortunate that he didn't smoke which would have been extremely detrimental to his health and life expectancy.

cindy - 12/30/99 03:10:33
My Email:ctorresgo@aol.com
City: yuma
State: az

Comments:


kathy - 12/28/99 00:17:19
My Email:kklamish@yahoo.com
City: Durand
State: WI

Comments:
Hello! I was just wandering through,trying to find some detailed info.about alpha1-antirypsin defienciency(sp??),I am 41 and was dxed(sp??) with copd last year and have been wondering after doing some reading what I really have,I am having some tests done soon,so wanted some info. so I know what is going on,I and others feel I have family med. history and my own to fit,etc.,etc.,. If you ever have a chance could you help me?? I'm kind of new at this computer stuff so I am having a hard time finding info. I you can't I understand and thank you for your time in reading this comment(???). Sincerely, Kathy Kromrey P.S.If you do get back to me someday,I am always reachable at my e-mail address or I can give you my regular home address too. Also your page is bea tifully done!!!

Arlynn Baber - 12/13/99 15:06:10
My Email:ababer@webtv.net
City: Carlisle
State: Iowa

Comments:
Hello, I am a Alpha 1 victim.I have lost 1 sister at age 35. I also have 1 brother and 1 more sister with Alpha1. Two of my sisters are fine.I sure could use alot of support from others.This is very difficult to live with and as much as i fight, i feel i m losing the battle.Thank's Arlynn

Tami Bristol - 12/12/99 19:05:52
My Email:tami_bristol@ssmhc.com
City: baraboo
State: wisc.

Comments:
Hi. I had put in my E-mail the last time I made a comment in here but forgot to put in the underscore.If anyone would like to contact me I would love to talk about this condition with you. My husband has been diagnosed for about eight years and is only 36 years old. We lost his sister to it 2 years ago after an infection set in about 4 years after her lung transplant. Very Scarry!She was 49. Please if you would like to talk or if you have any info you would like to share, contact me. Thanks! Take care!

Laura Pippio - 12/10/99 21:37:34
My Email:lpippio@hotmail.com
City: Deltona
State: Florida

Comments:
My 1-year old niece has this disease. I would like to find out what can be done, if anything, to help her live a full, healthy life.

donna evans - 12/03/99 02:10:47
My Email:dfe1961@aol.com
City: cosby
State: tn

Comments:


Jmaloney - 11/29/99 15:27:43
My Email:maloney@yahoo.com
City: Campbell Hall
State: NY

Comments:
My husand was resently told that his level was 78 out of a range of 103-203. How bad or good is this level. This is the hardest thing to find information on. We are right now in the process of a biopsy

Dave Krouse - 11/25/99 09:13:53
My Email:xr750wins@webtv.net
City: Gilbert
State: Arizona

Comments:
I have been living with this problem for 12 years and just need to talk with some one in similar problem i have a 12 year old daughter and a very loving wife and a four month old new born son please drop me a line God bless you and yours

joh white - 11/23/99 15:38:56
My Email:john.white@pwgsc.gc.ca
City: winipeg
State: MB canada

Comments:


Vicki - 11/23/99 14:14:25
My Email:vcameron@together.net
City: Topsham,
State: Vermont

Comments:
Hi everyone! Just wanted to say hello and take very good care of yourselves, you are important to so many loved ones. Each of us have to find our own way to deal with this deficiency, but we do that by sharing with each other. Let me know if I can help an one. Vicki

Brenda Frerichs - 11/17/99 08:54:49
My Email:bdfdb@angelfire.com
City: Amarillo
State: Texas

Comments:
My sister Betty Lou Giles was not told she had Alpha 1 until she went to Denver and seen a doctor Stanhouser there. Otherwise she was treated for years as an asthma patient. She died at 37 the youngest girl of 4 sisters. Now I am going through some scarry symptoms, my white blood count is real low and they are checking me for cancer. I was checked for Alpha recently, but don't know if it can do this to your white count. If you know please give me some input, as I am very nervous right now. Thanks alot And od Bless to all who has lost a loved one or has Alpha 1. Take Care Brenda

- 11/17/99 03:54:06

Comments:


lee watt - 11/14/99 15:23:36
My Email:rebelhog@dellnet.com
City: pascagoula
State: ms

Comments:
My father was diagnosed this week with alpha-1 anti-trypsin deficiency. He has advanced liver disease,is 63 yrs. old and does not drink alcohol.I have few answers. Does anyone know where I can find information?

lee watt - 11/14/99 15:22:09
My Email:rebelhog@dellnet.com
City: pascagoula
State: ms

Comments:
My father was diagnosed this week with alpha-1 anti-trypsin deficiency. He has advanced liver disease,is 63 yrs. old and does not drink alcohol.I have few answers. Does anyone know where I can find information?

tami bristol - 11/07/99 01:28:54
My Email:tami_bristol@ssmhc.com
City: baraboo
State: wisc.

Comments:
Hello again! To those of you who would like more info on Alpha just visit website alpha2alpha.org. That is how I found this guestbook in a round about way. I am very new at using computers so am not sure if it is the only way to visit This site or not but I found it very enlightening! Lots of info! Give it a try! Good Luck! Tami

Linda Sidey - 11/06/99 00:27:00
My Email:tsidey@mddc.com
City: Greenfield
State: Iowa

Comments:
I'd like to become a member of your support group. I've had Alpha 1 for 5 years. Now I'm having a hard time getting prolactin because I get my supply from a small hospital. Bayer has not supplied my dosage & I've missed 1 infusion.. my brother is waiting for a lung transplant, he is due for his infusion Sunday, Nov. 7. Please do you have any info that would h

sous - 11/04/99 17:56:39
My Email:ssousis@yahoo.com
City: Buffalo
State: NY

Comments:
I was trying to obtain information of a lung disease that was described to me as being very much like an earthquake within the lining of the lungs. If any one knows anything about this please contact me. I know that the disease starts with an A....but, wasn't really listening to the doctor when I should have and the next appointment is next week.

Ron Winborne - 10/31/99 20:05:31
My Email:rwcdigital@aol.com
City: N. Richland Hills
State: Tx

Comments:


tami bristol - 10/31/99 15:21:00
City: baraboo
State: wisconsin

Comments:
My husband has Alpha 1, I am just surfing to see if there is any new info out there anywhere.

Joyce Barney - 10/27/99 04:03:30
My Email:jmb49@yahoo.com
City: Highgate Center
State: Vermont

Comments:
I have just finished reading all of the notes in the guest book and I feel that it is a blessing that I came upon this website tonight. My mother is 76 and she is dealing with alpha1. She had one sister and one brother who died from this when they were in their 40's. The doctors say that my mother is doing amazingly well for her age but I can see that she has failed a lot in the past 12 months. She needs to be able to talk with others who face the same problems. I have printed out some of the information hat I found tonight and I'm going to show her the pages from this guest book so she will know that she is not alone in her battle with this disease. If any of you would write to my e-mail address, I'd be thrilled to print out the letters and bring them t her. She feels very alone in this and I pray that some letters from you will lift her spirits. God bless all of you! Thank you for reading my humble words. Joyce

Betty Benham - 10/24/99 18:28:13
My Email:BettyJBenham@Chicago.Avenew.com
City: Naperville
State: IL

Comments:


mm - 10/18/99 18:10:32
My Email:mmmm@hotmail.com
City: small
State: nv

Comments:


Blanche - 10/03/99 23:16:19
My Email:cmathies@fone.net
State: Colorad

Comments:
I was diagnosed as an MZ last month. I'm scheduled for a liver biopsy in a few weeks. I am 49, female and have had asthma for 15 years. Otherwise, I am symptom free. I lost several family members to emphysema. I'm curious about what to expect in the f ture.

joan radin - 10/02/99 11:53:41
My Email:learpharmacy@snet.net
City: ansonia
State: ct 06401

Comments:


Kansawa - 09/30/99 21:14:08
My Email:Kansawa@aol.com
City: Florence
State: Az

Comments:


Melissa Smith - 09/30/99 17:39:45
City: Desoto
State: Missouri

Comments:
Good luck to everyone. My husbands uncle has Alpha 1 (lungs) and his cousins son has Alpha 1 (liver), he had liver transplant in May of this year, his mother donated her left lower lobe to him. Both are doing great.

Vivian Jensen - 09/19/99 21:01:54
My Email:niel3@lightspeed.net
City: Fresno
State: CA

Comments:
My husband was diagnosed with Alpha1 in March and I surf the web occasionally for any new info on the disease. He is 51 years old and has suffered for years with chronic bronchitis. He has been misdiagnosed for many years. He recently has started prola tin. Hopefully this will slow down the disease.

Kim Hovmann - 09/16/99 19:34:28
My Email:khovmann@net2.dk
City: Skærbæk
State: Denmark

Comments:
It is great to finally find som info on A1AD. All the best from Denmark.

judy johnson - 09/11/99 07:01:59
My Email:Judith784@webtv.net
City: hollywood
State: ca.90028

Comments:
Hi I have the alpha 1 and my brother just had a double lung transplate August 14th of 1998. He is doing fine. He had a twin brother that also had the alpha 1 but he passed away June 29th 1998. He was only 40. I have the alpha 1 and I also have a twin sist r but she doesn't have the alpha 1 nor does my 3 other sisters. Why is it that my brothers & I got the alpha 1 but my sister didn't get it?

- 09/10/99 06:50:47

Comments:


vicki - 09/04/99 03:54:34
My Email:victoria@wantree.com
City: adelaide
State: sa

Comments:


Croft Kylo - 08/05/99 06:58:21
My Email:maskwa@sk.sympatico.ca
City: Sweetgrass Canada
State: Saskatchewan

Comments:
I may have alpha 1 antitrypsin I could use all the information that you could provide to me. Iam still in shock over the whole thing. I don't know what to say Nice music Respectfully Croft Kylo

Candace Barnes - 07/26/99 20:36:23
City: Wichita
State: Kansas

Comments:
This is amazaing. When my mother was finally diagnosed in 1982 this disease was completely unheard of. She died in December of 1984 at the age of 38. She was a nurse and desperately wanted to donate her organs. When she found out there was nothing to onate, she went full force and donated her body to science in hopes that the research would make a difference. Looking at this web-site makes me even more proud to be her daughter.

Gail Thomas - 07/26/99 00:51:47
My Email:Gailhol@aol.com
City: campo
State: California

Comments:


neil sterritt - 07/23/99 06:42:47
My Email:sterritt@inforamp.net
City: brampton
State: ontario, canada

Comments:


Priscilla Shields - 07/23/99 02:40:56
My Email:rshields@nm.net
City: Ramah
State: New Mexico

Comments:
Transplanted Texan from Ozona

Allison Krutsinger - 07/20/99 10:28:25

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Allison Krutsinger - 07/20/99 10:28:24

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Tamie Morehouse - 07/20/99 03:51:08

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Rachel Andino - 07/16/99 04:21:23
My Email:r_andino@bellsouth.net
City: Memphis
State: Tn

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- 07/04/99 16:33:09

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deb - 07/03/99 09:50:38
My Email:townley@ebicom.net
City: Columbus
State: MS

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We just found out that both of my sisters have alpha one. I was also tested, but am negative. I would appreciate any advise or information anyone could give me on this disease. I know very little as do my sisters. We would appreciate the help.

Cindy Azghani, RNC - 07/01/99 06:49:39
My Email:Cindyaz@juno.com
City: Tyler
State: Texas

Comments:
The University of Texas Health Center at Tyler(UTHCT) has done clinical research studies on AAT Deficiency. Dr. James Stocks a pulmonary doctor is the Alpha-1 expert at UTHCT. You may be eligible to participate in a clinical research study if you are a Z and not currently taking Prolastin. Check out current studies at UTHCT via www.uthct.edu

Sandy Neblett - 06/29/99 13:54:47
My Email:skyneb@yahoo.com
City: Newport
State: Tennessee

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I have an 8 year old daughter with A1AD. She is having lung problems. She also has Asthma. Her SGPT level is elavated,in the liver. The Drs. say don't do anything right now. I feel a like I'm in a whirlwind. We just found out about 6 wks ago and now they say do nothing. If you can help with any info, Please write. She is ZZ type. Thanks!

Sandy Neblett - 06/29/99 13:33:19
My Email:skyneb@yahoo.com
City: Newport
State: Tennessee

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rick holston - 06/24/99 20:51:45
My Email:phatstrat@citynet.net
City: belle
State: WVa

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Im 47 found out I had at age 38,No longer able to work at costruction tradeand cant afford treatments like so many others Im sure.The doctors told me in 88 Id be dead in 5 years well Ill piss on all thier graves so hang in there. best wishes

jpessman - 06/23/99 00:24:08
My Email:jpefaai@aol.com
City: St. Pete
State: FL

Comments:
I have a recent diagnosis of 1 alpha deficiency and would like to find out more detail about the condition. In addition I would like info on diet etc. Thanks, JP

TOM DERUITER - 06/22/99 03:02:18
My Email:walleyedtom@yahoo.com
City: mancelona
State: michigan

Comments:
I AM 33 YEAR OLD, I ALSO AM A CARRIER OF THE ALPHA 1 TRAIT. THE WAY I UNDERSTAND THIS TYPE OF DISEASE IS, IF 1 PARENT OR 1 SIDE OF YOUR FAMILY CARRIES THIS TRAIT, (LIKE I DO) THE CHANCES OF GETTING EMPHYSEMA ARE NOT AS LIKELY TO HAPPEN AT A YOUNGER AGE, P OVIDED YOU TAKE CARE OF YOURSELF.STAYING AWAY FROM SMOKING, LUNG IRRITANTS ETC. MY FATHER & AUNT BOTH CARRIED 2 TRAITS, FROM MY GRANDMOTHER & GRANDFATHERS SIDE. EACH OF THEM CARRIED 1 TRAIT. NOW MY FATHER WAS DIAGNOSED @ THE AGE OF 28 YRS MY AUNT @ APPROX 30YRS. BOTH MY FATHER & AUNT DIED @ 48YRS. MY GRANDMOTHER IS 85YRS AND HAS NO SYMPTOMS, MY GRAND FATHER DIED OF ALPHA 1 @ 84 YRS. IF ANYONE HAS ANY QUESTIONS, PLEASE E-MAIL ME AND I WILL TELL YOU WHAT I KNOW ABOUT MY EXPERIENCE.

Wendy theakos - 06/16/99 14:23:17
My Email:naffi@webtv.net
City: Bryan
State: Texas

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I can't get access to ANY A1A on the net.

STUART HOLMBERG - 06/11/99 18:00:33
My Email:JOHNHOLMBERG@HOTMAIL.COM
City: FAYETTVILLE
State: Arkansas

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Jennifer McGahan - 06/10/99 18:24:10

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JAMES F MURDOCK - 06/02/99 18:29:16
My Email:JFMURDOCK@INTERSPAN.COM
City: KANARRAVILLE
State: UTAH

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i WAS JUST LOOKING AROUND FOR A SIGHT I COULD GET INFO. ABOUT THIS

Tina Escobar - 05/27/99 04:51:56
My Email:escobarg@msn.com
City: Chicago
State: Il.

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Hi. My aunt died of alpha-1; my sister now says she has an "hereditary emphysema" and is being treated in Boston. I'm presently cleaning out my mom's home (she died several weeks ago). It is very dusty. I'm finding that I have episodes of difficulty b eathing when I'm away from the dust. I've become concerned and want to find out what I can about alpha-1.

- 05/25/99 14:02:37

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Gayle Allison - 05/22/99 23:58:06
My Email:gla0216@aol.com
City: Hurricane
State: WV

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Just stopped in for a visit. Very nice my friends. Thanks for the tour! From a fellow alpha!

Kay Simpson- - 05/16/99 19:34:01
My Email:tsimpson@adams.net
City: Payson
State: IL

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Just heard of this disease today from a stricken relative in the Chicago area. My daughter and I will have blood tests taken within the week. We could be carriers or victims...don't know. Where can I get a complete description (symptoms, treatments, etc.)

allison fetters - 05/13/99 19:39:07
My Email:jayde1@gateway.net
City: omaha
State: ne

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I am contacting this site in regards to finding out an affordable way of being tested for A1ATD.

Zorina Coward - 05/11/99 15:57:24
My Email:zorina.coward@cbn.org
City: Virginia Beach
State: VA

Comments:
My first husband died of cirrhosis. His full brother also had liver disease and was blessed to have a transplant: Alpha-1 was the culprit. Had our G.E. known about Alpha-1, perhaps Don would be alive today. My prayers are with all that have this deficie cy.

Jenny McClaugherty - 05/09/99 15:37:26
My Email:JMccla@aol.com
City: New Braunfels
State: Texas

Comments:
I have had Alpha1 for 6 years. I have been on Prolastin for 5 years given once a week. Seems to work.

- 05/05/99 16:20:06
My Email:slomag@aol.com
City: dayton
State: ohio

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Mark and Jodi Stewart - 05/02/99 02:18:54
My Email:mstewart@aguirre.com
City: Flower Mound
State: Texas

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Our daughter, Megan Stewart, has recently been diagnosed with Alpha 1 and cancer at Children's of Dallas. Our Dr at Children's of Dallas is Dr Keiljo (Alpha 1) and Dr Bash (cancer). We are going to Chicago in late May to see Dr Peter Wittington, Pediatiric Hepatologist at Children's Chicago.

roxanne - 04/26/99 03:42:34
My Email:roxon@uswest.net
City: fargo
State: nd

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Linda - 04/19/99 18:16:37
My Email:Kitllie.MSN.COM
City: Pheonix
State: AZ.

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Information on Alpa 1- Antitrypsin Deficiency!!!!

- 03/23/99 03:56:35
My Email:jrkmek@erols.com

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What exactly is A1AD? I have been all over the pages and there is A Foundation and chat room and this Texas Group; but nowhere is the disease defined and I am looking for information on diseases of the liver---specifically a disease where the fat cells a e eating the liver. JRK

JOE GIBSON - 02/26/99 18:39:04
My Email:JNCO2JOE@HOTMAIL.COM
City: HARRISONBURG
State: VA

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MY SYMPATHY GOES OUT TO ALL THOSE WHO HAVE THIS DISEASE. HURRY UP AND GET WELL!!!!!!!!

Jeff Hoover Jr. - 02/17/99 19:36:23
My URL:http://www.midmich.cc.mi.us/
My Email:jhoover
City: Mt. Pleasant
State: Michigan

Comments:
We found out our four month old has this ALPHA 1 but we don't know anything about it.

Jeff Hoover Jr. - 02/17/99 19:32:55

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K. Austin (Brand) - 02/17/99 16:36:08
My Email:kaustin@jhancock.com
City: Boston
State: MA

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My friend Michelle just found out she has Alph one and I want her to know that I am here for her and I will do what ever I can for her. If any one has some new information on this disease please email with the facts. I do appreciate any information. Tha k you. Michell take care

La Shonna Hill - 02/11/99 13:35:32
My Email:dianna61@hotmail
City: chicago
State: ill

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I am studing this disease and I want to know how it effect the people and family that have it.

F.B. Farnan - 02/11/99 12:26:19
My Email:mnurse@voyager.net
City: Hastings
State: Mi

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Where can I find out more about alpha one and what to expect, My wife has Alpha one and I feel lost not knowing what to expect, where can I find out more?

- 02/10/99 05:02:22

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Joy Sullivan - 02/10/99 05:00:42
My Email:squirt@istar.ca
City: Ontario
State: Canada

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I was just informed I have A1AD,searching for information as to inform myself and my family of what this is and what we can do for our familys.

- 01/25/99 20:02:49

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Debra Stanfill - 01/13/99 15:46:23
My Email:dstanfill@hotmail.com

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Thanks for the site!

Sheila - 01/06/99 23:00:11
My URL:http://yahoo.com
My Email:wsc24682
City: Baltimore
State: Maryland

Comments:
I am a 33 year old woman who has Alpha 1 and am looking for a support group. I have been listed on the transplant list since 05/98.

Jennifer McClaugherty - 12/01/98 01:05:27
My Email:j.mcclaugherty.gte.net
City: New Braunfels
State: Texas

Comments:
I would like to be on your mailing lists.

beverley james - 11/28/98 01:17:13
My Email:beverley .james@sidc.co.nz
City: christchurch
State: new zealand

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Jamie - 11/15/98 08:43:28
My Email:Jca840@aol.com
City: w. Lafayette
State: In

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Lost my mother to the disease after fighting for 12 years. Died 11/3/98 at the age of 51. My mother was the first individual on the protocal to use the prolastin treatment. I think that is what helped her to live for such a long time. If anyone needs o get intouch with a family survivor who took care of a sick family member and needs support or has questions please feel free to contact me at the above E-mail address. My mother was ZZ. There are at least five family members that have the disease. Thanks Jamie

j kaplan - 11/11/98 21:52:22
My Email:j-kaplan@nwu.edu
City: chicago
State: il

Comments:
just looking for information on heterozygous individuals; please send me anything you might have! thanks, jocelyn

Roxanne Kapaun - 11/10/98 04:47:53
My Email:lyle@fm-net.com
City: Fargo
State: ND

Comments:
I have been diagnosed with this, but have no terrible symptoms yet. I am 44 years old and doctors say don't worry about it Should I be concerned for my future?

Dan - 11/07/98 02:59:23
My Email:dakers1@ix.netcom.com
City: Houston
State: TX

Comments:
Just testing out the guestbook.