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June 18, 2011

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June 18, 2011

I was diagnosed with APS 2 yrs ago and am so lucky I found this organization on the web. The amount of information available is amazing and it's always growing. Doctors should be required to visit the website to better educate themselves! Then they would learn that APS has many symptoms. APS Foundation of America Inc also helps ease my frustrations by reading stories shared by other people with this disease. I'm so thankful for this foundation and all the amazing people that make it possible.

The Great!

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

This organization is like an online support group and has helped me in many ways.

Ways to make it better...

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

The only change I would make if I could.......would be to win the lottery and give 95% of it to this organization. I'd use the other 5% for my medical bills.

June 8, 2011

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June 8, 2011

About 2 years ago I was diagnosed with APS. Like others I had no idea what APS was . As I started to research what this illness that was I came across the APS foundation. Which truly has been a big help to me.Their website has great resources such as doctors that treat APS , articles and a newsletter with has lots of tips and stories of people that have APS. I'm so thankful for this foundation hearing some many stories about other people with APS has truly help me with dealing with APS.

The Great!

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

YES

Ways to make it better...

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

NO

June 6, 2011

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June 6, 2011

I was diagnosed with APS October 2010. When I first learned of my diagnosis I was scared and confused. The first thing that I did when I got home was throw myself into the internet to learn everything I could about APS. I came across APS foundation of America, and I have to say it was a sigh a relief. There is so much helpful information and it was written in a way that whoever was reading could understand it. I love the fact that they have a facebook, and on that facebook are so many people that have APS and can relate. I dont ever feel uncomfortable posting a quetstion because the people that are on there know what I am going thru and will not look down on me. I am greatful for a organization, it helps me in many ways understand my diagnosis and my family can go onto the site and get more of a insight of what I am going thru. In many ways it is my outlet when I am going thru my "down days". I am truely greatful.

The Great!

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

I have met many people who are also diagnosed with APS, there is a sense of connection with people on there since they know what I am going thru.

Ways to make it better...

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

I wouldnt change a thing.

June 3, 2010

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June 3, 2010

Hi, I have lived with APS for over 26 years now. In 83 I had clots go to both lungs. I was carry a baby at the time (6 months). The babies heart beat was 50 bpm and mine was 30. This was before Hughs syndrom, sticky blood or APS was even known. I have had clots to the lungs, miscarriage, and the latest was dvts. I had so many medical problems and when I had the dvts, over 9 years ago is when I was told that I had APS. I went to a thrombosis research doctor and that is how I found out. He told me that I have had this for most of my life. It is a hard disease to diagnose. I have found out that even within the last 9 years, there is still many medical personal that really knows nothing about it. I think also that people that has it and is not able to work that it would be easier to get disability. The SS disability personal does not understand it either. My doctor does not want me to work. I wish that I could help with getting the word out about this disease so that it would help others and myself. I love the APS Foundation of America. My Daughter did a research paper for one of her collage classes and received an A+. I love reading about others and knowing that I am not the only one going through this. Not only is it hard on the person with APS but also the families. I pray for all that goes through this.

The Great!

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

seeing that I am not alone

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How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

June 3, 2010

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June 3, 2010

I have been diagnosed with APS after 4 strokes and one spleen infarc. (between November 09 and April 10). I was on comaudin for a few months and still had strokes. The hemotologist finally deemed me a comaudin failure and I now inject Lovenox 100 mg twice a day. That is a life long prescription. I got home from my last hospital visit 5 weeks ago and found the APS organization. I am so grateful for having this information available to me and to help others by sharing my story. I know now that I have had a few strokes in my lifetime but I was always treated for anxiety or migraines. Thank God I now know the symptoms of a stroke and immediately get help. They listen to me now. The doctors and nurses had never heard of APS so we all learned together. Thank God for this website!!

The Great!

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

I am gaining knowledge for my disease.

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 3, 2010

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June 3, 2010

This foundation has been a Godsend to me. I found it by chance surfing the internet looking up information on this crazy disease I have. The members of the foundation work tirelessly to provide and maintain the forum. The foundation has provided me with information to educate myself with and the support of good friends suffering the same illness as myself. They have been there for me during one of the darkest times in my life and have cheered me on on the happiest days as well. I would be lost without all of there hard work and dedication.

The Great!

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

The foundation has geiven me the knowledge and the tools to take care of my health and to advocate for myself.

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

The support of others

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

Hard working and dedicated individuals despite their own illness.

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

Reach out to so many more people. More patients and doctors could be educated!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 3, 2010

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June 3, 2010

I was diagnosed with APS in 2008. I had no clue what it was or how to handle it. This foundation gave me answers and support. I am so thankful that I was able to find this wonderful support system.

The Great!

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

I have learned things I need to ask my doctors and things I need to look out for. Also when you have a question,, they help you get the answers

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

the caring staff.

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

June 2, 2010

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June 2, 2010

After losing a son at 18 weeks gestation and being told I had APS, I was very scared of what it all meant. One doctor told me I should never try to have children and another told me I didn't know what I had because they couldn't find the APS diagnosis in their medical database. I found this website while doing my own research and was so glad that I did. I was able to talk to other people who had gone through similar experiences as well a those who have been affected by APS much more than I have. I have gotten a much better understanding of symptoms and what to watch for in the future. Through the help and information on this site, I was able to have a healthy and safe pregnancy.

The Great!

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

the APS support forum-I received lots of information and support as I went through a pregnancy.

More feedback...

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

helpful staff members and lots of information on many different aspects of APS and how it affects your life.

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

very kind and friendly.

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

help so many people and doctors with awareness and education. Also help fund research.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 2, 2010

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June 2, 2010

I totally support your charity even though I do not have APS. I feel you are doing a wonderful and excellent job educating the general public and helping people. Take Care, Iris Springflower

The Great!

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

Facebook

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
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3 hours of volunteer time for this nonprofit will...

help with answering questions on the our support forums. You could also write a more cited technical article for our newsletter that could also be published in various places. You could also write and produce a YouTube video for the APS. You could also attend a conference, set up a booth for us at a session that the APSFA was invited to attend. Volunteer