Active listening is important. Your health care provider needs to know not only your symptoms but also your concerns so that they can adequately address them. Arguably this is even…
Everything that you do is more impressive than if the average person did it, because you're not average. Everyday you're combating a rare disease on top everything else. Everything you…
Lisa is living with Myasthenia Gravis, you can read more about her journey here. Was this true for you too? Once you fully accept your diagnosis you can focus your…
Don't lose your optimism or courage and don't ever give up. Illness isn't easy, but don't let it steal from you.
With chronic illness, rare disease, and life in general, there are always going to be rough patches where you start to lose hope. It's impossible to keep a positive, upbeat…
Living with an illness is going to impact you, there's no way around it, being sick Isn't something to be taken lightly How does it influence you? Despite the toll…
Have you been this for somebody? Has someone done this for you? Even simple things can improve someone's day and brighten their life, so why not try? KNowing someone's breathing…
Emotional support, someone telling you that they're there for you and that things will be OK, shouldn't be underestimated. It's important to have someone to lean on when the going…
You've got more inner strength than you realize! we all will sometime feel run-down, or scared, or hopeless, especially if living with a chronic illness. you have handled everything that's…
Sometimes well-meaning friends may not seem as supportive as they could be simply because they don't know how to help. Giving them a little direction would help both of you,…
Anyone thinking of unsolicited advice they've been given, from people who don't understand their illness? 9 times out of 10 chronically ill patients don't want to hear what you think…
The future can be overwhelming, and by "the future" i mean sometimes even just next week. Take things day by day and give yourself time to recuperate and refresh before…
Not only is a chronic illness always hanging over your head because of it's cost to your health, your social life, and overall well-being, most times it also takes it's…
Take a deep breath and know that even if other can't see it, your day, living with chronic illness, has been a battle. Every part of today has been a…
Humor helps a lot of people deal with rough situations, but even if that's the case, you may not your doctor to attempt to weave it into an office visit.…
Patient Worthy had the privilege of attending the Acromegaly Community Conference in Chicago April 29th –May 1st. We met some incredible people (stories to come), learned some valuable information (risks of…
Part of the symptoms, when you go back online and you look at some of the classic people that have acromegaly, the one that pops immediately is Andre the Giant.…
So my endocrinologist calls me and tells me I have acromegaly. First thing is she calls me and tells me I have this disease that I’ve never heard about before.…
Researchers at UCSF are searching for volunteers to participate in a clinical trial studying the effects of Deep Brain Stimulation on isolated/primary Dystonia. To participate you must meet the following…
Above photo by Sandro Georgi Photography Rob has led an interesting life to say the least. He was in the navy for 20 years and has lived in Florida, Alaska, Diego…
You may have seen the Jeffery Modell Foundation's name around town, literally, from their educational posters. I was thrilled to come across one in the Chicago O'Hare International Airport. The…
In the video above, PW Contributor Rob tells us about working to get an acromegay diagnosis. As he describes: "Acromegaly, unfortunately, a lot of times doesn’t get diagnosed until the…
HAEi, is an international organization of patient organizations for those affected by C1-inhibitor deficiencies. During an HAE attack any part of the body can painfully swell. When this swelling affects…
Rare conditions are difficult on so many different levels. It’s hard to find someone who can relate, to find a physician who is familiar with the treatment options, and to…
What are parents’ hopes for their children? Typically a happy, successful and long life. Children are often asked what they want to be when they grow up... but the growing…
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