We often hear people talking about the stress they are feeling during the holidays, while those in the rare disease community silently think, "You have no idea!" During this season,…
We often hear people talking about the stress they are feeling during the holidays, while those in the rare disease community silently think, "You have no idea!" During this season,…
We often hear people talking about the stress they are feeling during the holidays, while those in the rare disease community silently think, "You have no idea!" During this season,…
Upcoming Conference The International Society for Mannosidosis & Related Diseases (ISMRD) serves as an international patient advocate for those living with glycoprotein storage diseases. These include alpha-mannosidosis, fucosidosis, mucolipidosis type…
The task of letting go starts at the time of diagnosis of the rare disease, when families have to let go of the dreams and expectations they had for the…
When others learn that you are the parent of a child with a rare disease, they most likely correctly assume that doctor appointments and hospitals might be involved. Yet few…
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…
Pondering “If only” and “What if “ adds anxiety for rare disease families. It seems to be a part of human nature that we do a lot of looking back,…
We don't laugh because we're happy – we're happy because we laugh. -William James There is nothing funny about having a rare disease, but learning to laugh as often as possible…
There are people in society who seek to divide us based on what our differences are, such as color, ethnicity, religion, dialect, lifestyle, political persuasion, neighborhood, level of education and…
This year, The International Advocate for Glycoprotein Storage Diseases (ISMRD) has moved their International Conference from the US to Rome, Italy! The ISMRD is a non-profit who aims to be…
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…
It can be pretty difficult to live in a world where very few people understand your rare disease life. Thankfully, there is a way to find others through the internet,…
If you're looking for a time table for adjusting to, and accepting, the diagnosis of a rare disease, you won't find one, because there isn't one. The variety of rare…
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’ve dealt with the medical community in a number of ways throughout my life, from my first clerical job in a hospital, to numerous positions in hospitals in different states.…
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…
At any time of the day, in any hospital, a nurse is giving instructions to a parent, spouse, child, sibling or friend of a patient, as to how to take…
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…
Happy Father's Day Weekend Patient Worthians! This week we have an amazing essay written by CMT Warrior Sarah Magno regarding her personal experience overcoming rare disease obstacles. We also have some…
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…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
