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21 Reviews
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October 29, 2012

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October 29, 2012

The Acromegaly Community has helped me learn more about the condition. I have met others suffering from acromegaly so, I don't feel so alone. They helped me financially to attend the acromegaly conference. I am truely grateful for the Acromegaly Community.

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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?

2012

October 25, 2012

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October 25, 2012

At the age of 30, a year after having my second child, I was diagnosed with Acromegaly. My mind filled with fear and my body was being overtaken by anxiety. My doctors told me that this pituitary tumor was not going to kill me because I was diagnosed and was being treated but that my anxiety would kill me if not controlled. A few years later I found what is now called Acromegaly Community. The one thing I credit this community for, is for controlling my anxiety and saving my marriage. I say this with caution as I know only two people can save a marriage and that is the people in it, but I was reminded when I shared my story of how blessed I was to have a husband that stuck with me through my pre-diagnosis suffering when my moods were a complete mess, through diagnosis/treatment and is still now by my side 10 years later. It is critical for people to realize the toll any medical diagnosis can take on relationships. I finally stopped pushing my husband away and realized he was trying to help me though this tough time, simply in his own way. I was reminded I was blessed to have my husband and my family. I was never alone in this battle. My second support system, Acromegaly Community, allowed me to focus more on my family instead of letting anxiety control my life. The people I met though this community wanted to brainstorm and discuss the issues that were the most critical to explore. I was able to "work" with this group and then just be there as a wife and mother for my family. Prior to finding this non-profit organization I was researching all the time, talking about my condition all the time. Knowledge and understanding was all of a sudden provided to me by my new network of friends that could relate on the most personal level to the issues in life that a Pituitary Tumor producing excess Growth Hormone creates. These issues are softened with kindness, understanding and most of all friendship. Even when treatments are not working for some, I know that simply having a friend suffering with the same condition can be the best medicine of all.

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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?

2012

October 10, 2012

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October 10, 2012

Hello my name is Laura Ramsay, I would like you to know how thankful I am for the Acromegaly Community Website..Truthfully this site has been more than helped me face this doease but.has also given me hope and friendship...While undergoing radation therapy for 5 wks the founder Wayne Brown made a trip to see me ...not only did that help me feel not alone but several members made sure to keep my spirits up and that made all the differance...And trust me this website is more informative than any Ive looked at...so much my doctors have also used it...ty wayne and my loved ones ....we make a differance together...:)

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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?

2012

August 15, 2012

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1 previous review
April 4, 2012

There is nothing that can heal someone emotionally more than friendship. Acromegaly Community opened up my circle of friends and allowed me to move forward with my life after my diagnosis and treatmen... more

August 15, 2012

This organization is vital to the health of those with Acromegaly. There are many men and women suffering today wtih Acromegaly and they may not even know it. This organization has a goal to educate the general public about this condition in hopes of preventing long term damage from excess growth hormone. Money is not everything but it sure makes life easier. Those suffering with active acromegaly that cannot afford the best treatments available is another issue that Acromegaly Community helps to address. These are just two of the ways that I know Acromegaly Community reaches out to those in the community. It is small but mighty. ( Just like the pituitary! )

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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?

2012

April 4, 2012
1 person found this review helpful

There is nothing that can heal someone emotionally more than friendship. Acromegaly Community opened up my circle of friends and allowed me to move forward with my life after my diagnosis and treatment. Instead of feeling like I needed to be the one to search for answers on how to manage this condition I felt like I could finally stop searching and focus again on my family after I met Wayne. He took the load off of my hands. My load that was weighing me down, physically, emotionally and spiritually. He allowed me to share all of my thoughts and research, which allowed me to "let go" and focus my time on my family. In a way, Wayne ( Acromegaly Community ) saved my family which was a little rough on the edges due to my medical condition. I was on my last straw and did not understand why my husband did not want to hear about Acromegaly everyday. He was sick of it and basically did not want to hear the word in the house anymore. This made me resentful, distant, apathetic and angry. Wayne, gave me a different prespective. He said, " You are lucky to have a husband who cares for you. " Wayne could see my husband was trying to help me by helping me let go so I could focus my time on my children. This was about three or so years ago and looking back I am so thankful. This time has been priceless with my family. I am so blessed that Wayne took my " rambling throughts " and assured me he would help people with the information. He also let me work at my own pace and just basically was a mentor for me getting back into the teaching world when he was just steping out. Friendship is key in life and Acromegaly gave me Wayne as a friend and many many more that will be my friends for life. ( Michael W. Smith ~ Friends are Friends Forever If The Lords the Lord of Them.....) Thanks! I hope I can pay forward what has been given to me in the years ahead.

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

August 13, 2012

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August 13, 2012

My sister and my son both have Acromegaly and it has been an absolutely wonderful place to share stories and gain information about this disease that hardly anyone knows about. Well run and organized and truly from the heart to help others.

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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?

2012

August 12, 2012

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August 12, 2012

This is a great group, they help you get a better understanding of what you are going through. You won't feel judged and will having a feeling if joy to know that you are not alone. They are like family to me and helped me get through this, even on my bad days.

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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?

2012

August 9, 2012

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August 9, 2012

Acromegaly is a disease made all the more difficult by its rarity. After a laborious diagnosis you discover that no one really understands how you feel or what you need to know. Acromegaly Community is a wonderful resource of information and compassionate support.

More feedback...

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?

2012

December 22, 2011
1 person found this review helpful

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December 22, 2011
1 person found this review helpful

Acromegaly Community is my lifeline during the dark moments and my extended family when I’m looking for someone to understand what it feels like to have acromegaly. The world became a very scary when I was diagnosed with a rare disease, and it became even more terrifying when I couldn't find anyone who could relate to what I was going through. Acromegaly Community has given me the opportunity to network with my fellow acropals throughout the world. Not only can chat with them, but I can find a friendly shoulder to cry on when I need it, and be ready to offer my support to an acropal in need. It’s been a blessing to meet my new friends in person, look them in the eye, and tell them that I know exactly how they feel. Long story short, I don’t know where I would be without the emotional care and support that I’ve recevied from my network at Acromegaly Community.

More feedback...

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

December 22, 2011
1 person found this review helpful

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December 22, 2011
1 person found this review helpful

The Accromegaly Community is my safe place. I know when I go there, there will be others like myself. We can talk, we understand when someone is describing their feelings and there's always kind words of encouragement and support. Not even our doctors truly understand the way those in the community understand. I learn from reading the experiences of others that have acromegaly. Many of us are on the same medications and we share symptoms. I value my relationship with the community and am so glad it is there for us.

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

A lot

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

December 22, 2011
1 person found this review helpful

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December 22, 2011
1 person found this review helpful

I am the wife of a patient with this disease. This new support community has given us the opportunity to meet other people in the same situation as us. There are telephone conferences and an annual meet up that gives have been very helpful. The telephone conferences usually include a speaker who many of us might not have the chance to meet of ask questions of, all and all a great way to stay connected to people who really do know what you are going through.

More feedback...

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

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