Rare Disease Day 2012

How do you find the individuals who truly understand the disease you live with?  Imagine a disease so rare that you are one in a million or possibly one in five million?  It’s certainly not like having diabetes or breast cancer; unfortunately these connections are easy to come by.  On the flip side, rare diseases come in many forms; there are roughly 5,000 – 8,000 known throughout the world.  Many of these rare diseases are difficult to spell, pronounce and even treat let alone understand well enough to share the details with those who don’t have them.  In this scenario, the need to find someone who is “just like you” is vital to your peace of mind, well-being and ability to relate to others for encouragement and support.  This is a goal often difficult to achieve and can prove challenging.

Rare diseases affect so few people that they are often referred to as “orphan diseases”.  There are some diseases that are truly one-of-a-kind and usually happening because of a genetic defect, it can be difficult to find the support you need to feel better in your disease; connecting through shared symptoms and treatment insight can provide perspective on what might be misdiagnosed, undiagnosed, and incurable providing the encouragement you need in a world of isolation.

Social networking can assist an individual in finding that connection (needle in the hay stack) of rare diseases.   As a result of living with a rare disease, there are fewer medical professionals with a focus on these medical conditions and often fewer proven treatment options to consider.  Learning how others are living with a rare disease and their treatment approach is invaluable.  Preserving your anonymity and protecting your privacy is also important in meeting this need. Treatment Diaries is a great way to find people who understand.

Actual TreatmentDiaries passages:

“It is so frustrating when you KNOW you’re sick and the doctors just want to “pick” a diagnosis so they can get you out of wherever you are and on your way. In all fairness to them, I do think they mean well, for the most part. My GI wants to pin IBS on me because he can’t find anything else even though I have tons of esophagitis, white plaque coating the esophagus and severe gastritis, not to mention it feels like someone is putting a curling iron into my large intestine and trying to curl it…maybe I have a rare disease!” EDM

“I disguise my disease very well. I smile, I laugh, I cry every day! I try to enjoy my life as much as I can. But sometimes I feel overloaded and frustrated with my body, with my health and with the crazy mix up way that this disease and I get along. The disease usually wins out in the end, but I want to fight!” TAC

Would you like help adjusting to living with a rare disease?  People, friends and family mean well and want to offer sympathy through words like, “I know what you’re going through.” In actuality, the only people who can really relate are people who are dealing with the same disease or one like it. They can offer insight for dealing with symptoms, experience with specialists, advice for preventing complications, and most of all, an encouraging ear from someone who really understands. You may just need to vent, or you may need more in the way of communication with others and access to resources.

Do you have a rare disease or know of someone who does?  TreatmentDiaries can make a difference in a life affected by illness.  Isolation is no longer the only option. Users from around the world care about personal struggles with rare diseases and the conditions which consume your days.  Find someone just like you at www.treatmentdiaries.com and start feeling well in your illness.

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