patient | Page 71 | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

patient

  1. Home

Little Rock (AR) LLS Virtual Blood Cancer Support Group

We are pleased to let patients and families know about the LLS blood cancer support group opportunities around the country. These support groups are facilitated by LLS, not AAMDSIF. This virtual group meets on the first Tuesday of each month from 6:00-8:00 PM.  If you have any questions about the group, please contact - Harold Dean at DeanHaroldM@uams.edu or April Dumond, RN, MSN, OCN at radumond@aol.com. Regitration is required to receive the login information to join the group.

Aplastic Anemia and Treatment-Related Complications Influence Career Choice

Person's Name: 
Bridget Daw

In December 1992, I was an 8-year-old, halfway through second grade, when strep throat and a urinary tract infection just wouldn’t go away. A late-night trip to the emergency room revealed dangerously low levels of platelets, which explained this and the severe bruising all over my body and rashes on my joints. My platelets were under 2,000 and I was supposed to have 250,000.

Bone Marrow Disease(s): 
Content source: 
eBulletin / eInsider (story of hope)

Low Dose Danazol for the Treatment of Telomere Related Diseases

If you are interested in learning more about your possible participation in this clinical trial, please complete the form. Your information will be forwarded directly to the trial sponsor.

DNA is a structure in the body. It contains data about how the body develops and works. Telomeres are found on the end of chromosomes in DNA. Some people with short telomeres or other gene changes can develop diseases of the bone marrow, lung, and liver.

Find Out More:

Patient Trusts Her Instincts in Finding the Right Treatment

Person's Name: 
Sherry Pratt

I never thought I would be diagnosed with cancer. I taught exercise classes, walked every day, ate a Mediterranean diet, and paid attention to products I used on my skin.  I became a certified health coach and taught healthy living classes.  

Bone Marrow Disease(s): 
Content source: 
eBulletin / eInsider (story of hope)

I Was Alone With MDS Until I Connected With Others on Social Media

Person's Name: 
Jane Biehl, PhD

I sat quietly in the oncologist’s office. The doctor confirmed that my diagnosis was MDS and calmly stated, “The average survival term for your kind of MDS is 104 months.” I felt the room spin.

 

I never have been healthy, and suffered from upper respiratory infections all my life. Kidney and bladder infections plagued me all through college, and I have had a severe hearing loss since birth. I had been diagnosed in 1986 with an IGA deficiency, meaning that I had insufficient immunity although I was treated symptomatically with antibiotics when needed.

 

Bone Marrow Disease(s): 
Content source: 
eBulletin / eInsider (story of hope)

Confronting Challenges in Finding Matches for Multiracial Patients

Person's Name: 
Krissy Kobata

34-year-old Krissy Kobata is a passionate patient and advocate/activist. Diagnosed in 2008 with MDS, she’s the epitome of resilience as she has waited for years to find a matched donor. She has devoted this time to helping other patients by enlarging the Be The Match® bone marrow registry.

Bone Marrow Disease(s): 
Content source: 
eBulletin / eInsider (story of hope)

As Patient Advocate, Emma Makes New Friends

Person's Name: 
Emma's Story, Part 2

When Emma was still being seen at the NIH twice a week, we were talking with her physician’s assistant about her t-shirt fundraiser and her Facebook group. After hearing what Emma was doing with these activities, they asked her to be their new pediatric patient advocate, helping newer pediatric patients with advice on how to cope with treatments. This seemed to be another way we could help.

Bone Marrow Disease(s): 
Content source: 
eBulletin / eInsider (story of hope)