The care of a loved one with a debilitating condition often falls to their mother, but fathers, siblings or spouses also may take on that role. Even if there is…
Much has been said about the way in which social media is affecting society today. Recently, many of the remarks have been negative. Yes, it has been used by some…
Perhaps it is because parents often feel dissatisfied with the results they receive for their children through traditional medicine that they sometimes look elsewhere for treatments to improve the conditions…
When raising children, parents spent a lot of time discussing the challenges of child-rearing with others, reading articles and books, and wondering if we were doing the right thing in…
If you attend a conference of rare disease families, you might not even notice that many of those who are helping out with all aspects of making sure that everything…
I was fortunate to have had optimistic role models during my formative years. They taught me that glass wasn't either half empty or half full, because the glass can be…
Due to a rare disease affecting many parts of her body, my oldest daughter, Kelley, saw a number of different doctors in a number of different locations. I clearly remember…
Recently, when another rare mother and I were discussing the many trials that rare disease families face, we agreed that we wished that the general public would understand how vulnerable…
Happy Friday Patient Worthians! This week we have two awesome contributions. One addresses grieving as a parent of a child with rare disease. Another addresses living with CRPS and other…
There is no way to prepare yourself to hear that your child has an incurable rare disease. After the initial shock of learning that their child will most likely die…
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