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lilsis64

138 profile views
2 reviews

Review for VHL ALLIANCE, Boston, MA, USA

Rating: 4 stars  

When I was diagnosed with VHL in 1999 I was in shock. My father had passed away due to complications resulting from VHL. My sister who is 4 years my senior had been sick with VHL as well for at least 13 years before I was finealy diagnosed. When I was diagnosed I was expecting something a little differant. I had many previous CT scans and MRI's and I was told it was anything from nerves to migraines to mental illness. I was scared and I got information that VHLFA existed. I thught it was only there for people that needed financing, I was not aware you could just call and cry and talk to them just like a friend, someone who really understands your feelings. I love VHLFA it is a blessing, between Joyce and NIH I am able to deal with things I do not understand. We can talk to her online or call and she listens and answers your questions and if she does not know, she will find out for you. Thank you Joyce and thank you VHLFA for being so wonderful. God bless all of you.

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

Role:  Client Served

Review for VHL ALLIANCE, Boston, MA, USA

Rating: 5 stars  

I remember when I first found out I have VHL. I called and spoke with someone at the call center, they listened while I cried and asked questions. If I need to know something or I am just afraid of what is happening in my body all I have to do is call or facebook Joyce G. and there is someone who cares about me. I have had 5 brain surgeries and I am do for my kidney surgery very soon 2.8 cm. so I know it is comming but I also know I can call and ask VHLFA questions and they will do everything they can to help me. This is one of the most caring and loving team of people I have ever contacted running neck and neck with NIH. Thank you Joyce and thank you team. God Bless you and stay just the way you are!

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

Through my sister

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

It has helped to give me hope and to allow me to accept that I am an illness, it does not have me.

When was your last experience with this nonprofit?

2010

Role:  Client Served & I called and they helped.