Hi. My name is Sue and I have hereditary hemorrhagic telangiectasia (HHT).
I have been ill for some time now. HHT is a blood vessel disorder. I have spontaneous nosebleeds on a daily basis. It has been corrected in the past. I had dermal septoplasty surgery, which is a microscopic surgery. I had skin grafting done on both sides of my nose, but not at the same time. It did work for two years. I think I am having the same problem at this time.
I also have the HHT in my lungs, which is called HHT in arterovenous malformation (AVM). I have a hard time breathing. At times it is so difficult.
I have had three coils put in my lungs to help me. This is called HHT in AVMs. The coils really helped me. I still have four AVMs in my lungs, but they are too small to see so they are not dangerous to my health at this time.
I had the balloon embolization done also. I receive both blood transfusions and iron transfusions. I am anemic. I really get a lot of medical attention because I have such a rare blood disorder.
I am starting to understand my sickness a lot better than in the past. When I feel sick, I get my blood test to see what is wrong. Or if I need a chest x-ray or a CAT scan with the dye, I get it done.
I learned about my sickness at Yale University in Connecticut. I also belong to the HHT Foundation, which is also in Connecticut. I did get very good help because I actually found where to be helped on the Internet.
I will be once again seeing the ear, nose and throat (ENT) specialist who performed my dermal septoplasty surgery about two years ago because I am starting to have repeated spontaneous nosebleeds once again.
I hope I can be of help to anyone who suffers the same sickness as I have. Or if you just want to share some of your stories with me, that will be okay with me.
New email address needed 09-26-06 SLE
Old Email Prefix: babyc1954
Story posted 3-26-03
Story Artist: Ione Bridgman
Story Editor Saba Sadiq
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series .
Saba Sadiq is the ISN Story Editor for this story.
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.