Monday, April 30, 2012
On October 16, 2008, a very special person in my life succumbed to MPA. My Grandmother was initially diagnosed in June 2008 with the rare disease and rapidly her health declined. Before June, I had never heard of the disease or the damage it can inflict on individuals. The course varies for everyone but in my Grandmother's case, she initially had bleeding in her lungs followed by renal failure requiring dialysis. Interestingly, there is no clear trigger for the onset of symptoms and most who receive this diagnosis overcome the disease. As with everything, I learned most about the disease from the internet but I want others going through similar situations to have a place to discuss their experiences.
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Mary,
ReplyDeleteI'd never heard of MPA until reading your blog. This is a devastating disease that I look forward to learning more about from you blog posts.
People always say you should try to learn something new everyday...this disease took me by storm! I hope this information will someday help you with a patient or family member dealing with this process.
DeleteMary,
ReplyDeleteAs Sheri, I have never heard about this disease. I appreciate you sharing your story and hope to learn more about this disease.
Margaret
Hi Mary,
ReplyDeleteI love the picture of you and your family! I have not heard of MPA either. I have seen patients come in with vasculitis and that is very painful. I look forward to learning more about MPA from your blog posts. It sounds similiar to systemic lupus erythematosus in symptoms and progression. I am sorry about your grandmother and this personal experience. Lori
Interestingly, it is considered an autoimmune type disease. If I can teach one person about this disease, I would feel much better about the whole thing. She told me she wanted me to learn about it so I could be better capable of dealing with it in the future should the need arise. Very wise woman!
DeleteMary, this will be a great resource for people and their families who suffer from MPA. The internet has become an essential resource for patients and this will be a great site that offers validated information from a healthcare professional!
ReplyDeleteI agree with you. Today, patients and their families are very knowledgeable of their disease processes and the internet has a wealth of information. Blogging helps people with similar circumstances connect.
DeleteThank you Mary for sharing such a personal subject with everyone. I am sorry for your loss. I think you are doing a wonderful thing by educating us on this illness. This was the first time I had heard of MPA.
ReplyDeleteThank you April!
DeleteMary,
ReplyDeleteThanks for sharing information on MPA. Reading your blog promted me to google more information on this disease. Thanks again! Nice family.
I've added links that I found useful. I hope they help you.
DeleteHi, Mary,
ReplyDeleteI love the picture of you with your girls....it made me smile! It looks like many of us are not familiar with MPA so you can be our educator and resource. I'm sorry you had to be educated about it through personal experience but your experience may truly help others become knowledgeable. Do you have a link we may access?
Thanks Laurie! I've added links that I found to be useful. My Grandmother always wanted me to continue to learn and before she died she wanted to me to learn as much as I could about this disease so I could talk to the doctors and share with her. She was a wonderful person and I know she would want others to learn from her experience.
DeleteMary, I think you have fulfilled your Grandmother's wishes. You are educating all of us on this disease and will help others cope with it's devastating effects. I appreciate learning new information and this one was new to me as well. Thank you for sharing your passion with us.
ReplyDeleteTerri,
DeleteIsn't it interesting how our personal life's lessons can in turn be used to help others through similiar experiences. Especially in the nursing community where there is so much opportunity to share our knowledge with each other! I love these blogs! Lori
Mary,
ReplyDeleteThis is great blog. As others have shared also, this has really helped me in understanding more about this disease. I feel like these blogs have been so great for all of us to network and learn from each other and be able to others in our personal and professional lives. Thank you, Marla
Hi Mary,
ReplyDeleteThanks for sharing the information about a rare disease.I think this blog will provide a great mental support for the people who sufer from same kind of illness.
What a fabulous site. I also had not heard of this disease until you posted it. I really like the video that you posted. This personal touch puts a face to disease.
ReplyDeleteKelly - wasn't the video interesting? I think it really personalizes these issues when we have the opportunity to see people tell their stories. JJ
DeleteMary,
ReplyDeleteSorry to hear about the passing of your grandmother. The beauty of this situation is that you are taking a tragic situation and using it to enlighten others. Before your blog I had never heard of this condition. Thanks for allowing me to learn about this disease on the behalf of your grandmother. Take care!
Jennifer