A year ago I was diagnosed with severe iron-deficiency anemia. Many tests and doctors later, I was told I had lupus and gastric antral vascular ectasia (GAVE) disease. I have had four transfusions (eight units of packed red cells), a series of iron infusions, and five argon plasma coagulation (APC) procedures. I am scheduled to have another APC next week.
My hematologist and gastrointestinal specialists are very supportive, but I am so frustrated at how little any one seems to know about GAVE disease. Isn't there any place I can find out more about this illness?
Can this condition ever be cured? Will I be going for blood tests every two weeks forever? Does it get progressively worse? Will I ever get my energy back? Is there anything I can do—foods I should or should not eat, exercise or no exercise, rest or keep pushing myself—that can affect my prognosis? Are there any "watermelon stomach specialists" out there?
Please email me with your experiences, advice and suggestions. Thank you for caring.
I have now been diagnosed with Mixed Connective Tissue Disease (originally I was told I had Lupus.) My most troubling symptom is GAVE's disease. My stomach lining continues to bleed in spite of the fact that I have had 13 APC's (and scheduled to have the 14th in two weeks).
I am at the hematologist's office every couple of weeks. I have had so many ferratin infusions, I've lost count. I have developed a sensitivity to the iron infusions, so I have to be pre-medicated before each infusion and I can't drive for the rest of that day (because of the Benadryl) and I feel pretty punk for at least two or three days afterwards.
In spite of the fact that my GI doctor assures me that there is no pain associated with GAVE disease, I have frequent stomach pain, bloating, and other GI problems that I never had before developing GAVE.
I have recently developed the dry eyes and mouth associated with Sjogren's. I wonder what's next?
Email: [email protected]
Story edited 03-11-05
Story posted 03-11-05 SLE
Story update edited 10-04-07 JTD
Story update posted 10-12-07 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Mixed Connective Tissue Disease
Overlap Personal Stories
Watermelon Stomach (GAVE)
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.