The following forum members have written interesting and informative accounts of their personal experiences with bone marrow failure diseases. They are sharing their stories in order to help other patients and family members learn how they have dealt with the diseases, treatments, recovery, and their lives. Click a picture to read a profile or click the arrows for more profiles.
Meet some of our forum members
Profiles - of
Birgitta Alexius was a retired psychiatrist living in Stockholm. She was diagnosed with MDS with severe fibrosis in 2006. She tried a number of different drug treatments, finally reaching transfusion independence in 2010. She was an active Marrowforums member, providing information and support to other patients.
Read Birgitta's story
Alyse Booth received ATG treatment for aplastic anemia in 2008. Her counts improved but she developed serum sickness and infections. When she relapsed with severe aplastic anemia 16 months later she chose an NIH trial of Campath over another round of ATG. She recorded her day-by-day experiences during the trial.
Read Alyse's story
Ruth Cuadra was busy with home, work, and family when she was diagnosed with AA in 1996 and given ATG treatment. In 1998 she was rediagnosed with MDS and underwent an unrelated-donor bone marrow transplant. She is now a volunteer for the Aplastic Anemia & MDS International Foundation and a Marrowforums administrator.
Read Ruth's story
Evan MacNeil's journey with aplastic anemia began in October 2007, the month of his 10th birthday. His proactive parents guided him through ATG (which failed to cure him) and then a successful matched unrelated bone marrow transplant. Evan's story is told by his mother Nicole MacNeil, with final comments by Evan.
Read Evan's story
Andrea Pecor has had AA for over 35 years. She was diagnosed in her 20s and has had five successful rounds of ATG treatment, deciding against a bone marrow transplant. She has had countless transfusions over the years and has helped countless patients as a volunteer for the Aplastic Anemia & MDS International Foundation.
Read Andrea's story
Kirby Stone, a retired engineer, educated himself when he learned he had MDS in 2004. He was proactive in seeking treatments and trials and had positive responses to Thalidomide and Revlimid. He tried Vidaza but had more success with a combination of Thalidomide, Dacogen, and a Promacta trial. He encouraged patients to help themselves.
Read Kirby's story
Share Your Story
There are many ways you can share your own personal story at Marrowforums:
- To tell your story in the forums, go to the Tell Your Story forum and start a new thread about yourself. Keep other forum members informed by posting again when you have news to share.
- To provide brief information about yourself for other forum members, fill in information in your User Profile, such as your geographic location, disease, and your relationship to the patient. The forum system automatically adds forum information such as your User Name, the number of posts you've made, and the date you last visited Marrowforums.
- Fill in your Forum Signature with a brief summary of your condition or current status. This information will appear under each of your posts in the forums.
- If you have a personal or family home page or other website page that you would like to share, put the URL in the Home Page field of your User Profile.