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Patient story

Suzanne Gonzales

I was diagnosed with PH in June of 2007. I was in complete shock and disarray. I am now on permanent disability and receiving $258 monthly.

I go into feeling sorry for myself mode at least once a day; shamefully I admit. I’ve been with my spouse since July of 1995. As of December of 2006 he made me an honest woman by taking my hand in marriage. If you ask him why he'll tell you because of the health insurance he has, but in reality it was because he truly loves me unconditionally.

The reason I am sharing this with you is because he has been my rock through this nightmarish journey. He has never once made me feel bad for not being able to work, or paying for my costly medicines that add up about $300 monthly, or coming home from working a 11:00P.M. to 7:30 A.M shift at the Post Office to taking me for my many doctor appointments that go clear across town. I just want to acknowledge him as a great caregiver and husband.

Sometimes, well to be honest most of the time, I am always negative and on the pity pot. I forget that I do have a team—my husband and I. That is the selfishness in me—what about him? This has to be hard for him as well. Knowing we might be separated any given day due to my illness. We are both young still. I’m 35 and he is 36. I honestly can say I’ve never heard a negative comment or complaint from him. Thank you for letting me share my story with you.

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.