living with disease

Shares her 11-year-old daughter's story

Brianna had always been a healthy young girl. We initially noticed some rather minor things with her but did not know at first how serious they were. She had low-grade fevers that went away during the day, but came back in the evening morning and there was her first-ever nosebleed. She missed school for a few days, so we saw her doctor. There is also a clotting disorder that run in our family – so I also wanted her to be checked for this because she had reached age where this should happen.

San Diego Family Takes Action for Awareness

My husband David’s journey with MDS began in April 2014, when it was discovered almost by chance while we were on vacation. David was bitten by a brown recluse spider and had a very severe reaction to it. He had to be hospitalized, which is when he got his first blood test in years. The doctor noted that his blood counts were low and, while he didn’t rule out that the spider bite might have affected the counts, there was a possibility of myelodysplasia.

Fighting PNH While Helping PNH Patients

I’m 31-years-old, and I was diagnosed with PNH in 2009 when I was 24.

I am generally athletic, and in college I was a wrestler. I knew what I could expect when training, competing, and recovering from competition. I transitioned from wresting to mixed martial arts (MMA) in 2008. Naturally, when I started that, I wanted to be sure that my training and recovery were the best they could be.

Saved by Her Twin Sister

I was your typical 14 year old teenager who always enjoyed spending time with friends and playing sports. On and off for about two years, my parents would take me to see different doctors to figure out why I had aches and pains, stomach issues and fatigue.  

Lebanon (NH) Virtual Blood Cancer Support Group

Dartmouth-Hitchcock Norris Cotton Cancer Center holds a blood cancer support group on the second Wednesday of every month from 3:30 to 4:30pm.  At the meetings, blood cancer patients and their families will connect with each other and share experiences. Registration is required for you to receive meeting details and login information. To register, please contact - cancersupport@hitchcock.org. 

Norris Cotton Cancer Center
One Medical Center Drive
Lebanon, NH 03756

For more information about the group, call (603) 650-7751.

Sacramento (CA) LLS Virtual Blood Cancer Support Group

We are pleased to let patients and families know about the LLS  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 6:30 to 8:00pm. If you would like to join the Sacramento (CA) virtual blood cancer support group, registration is required. Use this link to register and receive the login information to join the group, https://www.llsform.org/ho0999SER/SCM1FSG/index.html. 

 

 

 

 

 

 

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Please use this feedback form to report website issues only. For other issues concerning patients and families, please email help@aamds.org or use the Patient and Family Helpline here.