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bre1

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1 reviews

Review for The LAM Foundation, Cincinnati, OH, USA

Rating: 5 stars  

I was diagnosed with LAM following a 10 day hospital stay. Other than being short of breath, I had no reason to suspect I had anything wrong with me. The diagnosis of LAM shattered my world. Overnight, I was thrust into a world of full time oxygen use, a rare illness no one had heard of, and my doctors (former, now) were of little help. I googled LAM and came across the LAM Foundation. What a diffenence a search can make! Within a week, I was sent a packet in the mail, telling me many critical things that were known about LAM. More importantly, the Foundation sponsers a list serv grou- where women with LAM can communicate- for help, support, and information. This changed my outlook dramatically, as I was able to learn, and cope, and adjust.

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

I was part of the MILES trial that the Foundation funded. It was because of them I developed a relationship with the Cleveland Clinic, where I hope to get listed for a double lung transplant- the only treatment open to LAM women.

What I've enjoyed the most about my experience with this nonprofit is...

The information avialable- up to date! The caring way each and every one of us are treated. The fact I was allowed to participate and make a difference!

The kinds of staff and volunteers that I met were...

They are warm- and approachable, and care about every single LAM patient they come in contact with.

If this organization had 10 million bucks, it could...

FIND A CONCRETE TREATMENT FOR LAM.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

Role:  Client Served & I received a life line.