My Diagnosis
In the summer of 2014 I noticed ongoing bruising all over my body. At first, I thought it might have to do with my diet (low iron), but soon I noticed a new kind of mark on my skin, almost having a bulls-eye appearance. By end of summer I knew I had to do something about this.
In October 2017 I was hospitalized for extreme dizziness, vomiting, fatigue, bruising, and shortness of breath. As an active, healthy person, having these symptoms was worrisome. My husband took me to the emergency room, where they performed a series of tests. We waited for my results, and a nurse looked at me and asked if I realized how pale I looked, and neither my husband or I had even noticed.
In May 2017, life was good and I was “living the dream”. I had been working full time for about a year after graduating from the University of Kentucky. I was living in Columbus, Ohio, working for an organization that supports children with childhood cancer and catastrophic disease. Everything was on track for my future.
I started to feel sick. At first it seemed like flu-like symptoms of fatigue, racing heartbeat, lack of energy and some bruising that just wouldn’t go away.
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 group meets on the first Wednesday of every month from 5:30pm-7:00pm. The group is facilitated by Jim Willsey, Ellie Colins, Susan Garland and Diane Passantino. If you would like to join the support group or want more information, please contact LLS, (401) 943-8888.
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 group meets on the the second Thursday of the month from 6:00pm - 7:00pm at Breslin Cancer Center 401 W Greenlawn Avenue Lansing, MI 48910. The group is facilitated by Robin Willner. There is no charge to participate in this group but pre-registration is required, https://www.llsform.org/ho0999SER/LAN1FSG/index.html
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.
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.
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.
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.
The AAMDSIF PNH Patient Travel Assistance Fund offers limited financial support to help U.S. based PNH patients see a recognized specialist to seek the best course of treatment.