I am a patient (not a medical professional!) who has been dealing with hemicrania continua since 2009. This causes constant head and facial pain on one side of the head 24/7. I am looking into occipital nerve stimulation as a treatment as I have tried everything else.
Friday, February 17, 2012
Advocacy for Patients with Chronic Illness: Raise Your Hand for Rare Disease Day
Check out this link from a blog I follow (Advocacy for Patients with Chronic Illness). If you go to this site to "raise your hand" $1 will be donated.
Thank you for sharing your story in honor of Rare Disease Day. My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. As you know personally, it is so important to be an advocate and speak up for our loved ones. My hope is that someday other families will not have to go through what we did, which is why I founded LALSolace -- a support group for people and families affected by LAL deficiency. I wish your family well! Mary http://www.lalsolace.org
2 comments:
Thank you for sharing your story in honor of Rare Disease Day. My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. As you know personally, it is so important to be an advocate and speak up for our loved ones. My hope is that someday other families will not have to go through what we did, which is why I founded LALSolace -- a support group for people and families affected by LAL deficiency. I wish your family well! Mary http://www.lalsolace.org
Mary, my heart goes out to you. I am so sorry for your loss. Thank you so much for taking the time to read my blog.
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