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1 reviews

Review for Loeys-Dietz Syndrome Foundation, Baltimore, MD, USA

Rating: 5 stars  

I recently was diagnosed as having a genetic abnormality that makes my family members and I prone to aneurysms. Several family members have died of aneurysms as a result. The Loeys Dietz Syndrome Foundation has provided me with reassuring information and their forum has allowed me to speak with other people who have this rare disorder. So many issues come up that are difficult to discuss with medical professionals in the time alloted for an appointment. It has meant a lot to me to be able to read comments on the forum and post my own concerns about issues like pregnancy, childbirth, insurance, surgeries and symptoms. It has meant a lot to be able to read about those who live with this disorder and to know that it is not necessarily a death sentence.

I've personally experienced the results of this organization in...

My confidence and the amount of knowledge I have about my own health condition has increased dramatically as a result of the Loeys Dietz Syndrome Foundation. Their website has allowed me to meet people all over the world with this rare disorder online and connect with the few people locally that have the same condition I do.

If I had to make changes to this organization, I would...

More medical professionals posting on the forum, perhaps a 'library' of downloadable research.

How would you describe the help you got from this organization?


How likely are you to recommend this organization to a friend?


How do you feel you were treated by this organization?

Quite well

How did you find this group?

Googling for more information about my own condition and the recommendation of my specialist.

What, if any, change in your life has this group encouraged?

That the diagnosis was actually a blessing in disguise - knowing that I have this condition I can act to prevent my own death through regular testing and surgery to correct aneurysms. I also learned that I can have children and that there may be ways to prevent passing this genetic condition on to the next generation.

When was your last experience with this nonprofit?


Role:  Client Served & Joined an online forum for support.