After I was diagnosed with myelofibrosis I was blessed to find a support group on Facebook that is very well managed and full of caring people with experience in my disease. Some are patients, others are family members and caregivers. The group encouraged me and helped me get educated about MPNs in general and myelofibrosis in particular.
Being a part of my support group is one of the best things that has happened to me with respect to having myelofibrosis. The people in the group and I have a special bond - our disease. We care for each other, share with each other and encourage each other.
The downside is the constant reminders that myelofibrosis is a fatal disease. Over time we lose friends to death. We struggle with every loss. It is always difficult.
Being a part of my support group is one of the best things that has happened to me with respect to having myelofibrosis. The people in the group and I have a special bond - our disease. We care for each other, share with each other and encourage each other.
The downside is the constant reminders that myelofibrosis is a fatal disease. Over time we lose friends to death. We struggle with every loss. It is always difficult.
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