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37 Reviews
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June 4, 2010

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June 4, 2010

APS foundation of America has organized lots of information that is so helpful to those of us suffering from APS. I had a stroke 13 years ago, but was not diagnosed until 2000. Hopefully, this organization will bring more attention to APS so new and better treatments will become available.

The Great!

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

learning more about treatment plans

More feedback...

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

education

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

n/a

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

help find better treatments and causes for APS

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

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

more

June 3, 2010

I've received much information from the APS Foundation since my strokes. I am not able to tell you more right now, but they are fabulous at what they do...

The Great!

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

Education regarding APS

More feedback...

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

how available they are!

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

wonderful!

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

change the world!

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

June 3, 2010

more

June 3, 2010

After a major stroke in 2008 the doctors could find no reason for me to have a stroke. I was 48 and in moderate to good health. After much perserverance of my neurologist and the hemotologist he brought in and a battery of tests. They took blood until i thought i'd had no more to take. I was finally diagnosed with Antiphospholipid syndrome. After 1 month in the hospital and rehab. With several months of outpatient rehab to go my search to find out about APS with the help of my family began. that is when i found APS Foundation of America. They provided me with the information in needed and info I could share with my medical team to understand this under diagnosed disease. After reading more and more about it I feel I may have had this much longer than suspected. APSFA has been very helpful to me my doctors and family in learning about this disease. Spreading the word and getting people the help and information they need to find out about this disease and learn how to live with it. Christine White

The Great!

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

learning more about my disease and how to live with it.

More feedback...

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

alot of good educaiton information avialable and medical help finding doctors who know about the disease

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

very knowledgeable, kind, caring individuals

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

spread the word about APS raise awareness. expand research. help more poeple with this disease.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 3, 2010

more

June 3, 2010

I found out in 2007 that I had APS after clotting during a surgery and subsequently getting two pulmonary embolisms. Nobody seemed to know ANYTHING about this disease and I had to do the research myself. APSFA provided great information, reading recommendations, support materials to give to my doctors and have a wonderful patient forum. At one point, my doctors were tracking my PT/INR with a finger stick machine and the APSFA was where I found out that finger stick machines don't work for APS patients! They can give an incorrect reading. They pointed me to the manufacturer materials that stated the machines were not for APS patients. Now my doctors always check my levels with a blood draw to insure a truer measure. This could be the difference between health and another blood clot.

The Great!

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

I use their forum to discuss coping strategies, new symptoms and recommendations on products. I also use the materials to raise awareness with the public and my health care team.

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

the helpful and friendly people I have 'met' through the support forum!!!

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

create blanket awareness campaigns with the medical field and with the public. They would have the starter funding to start research fundraisers similar to the way Susan G. Komen has for breast cancer.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 3, 2010

more

June 3, 2010

In 2002, our 14-year-old daughter was found to have APS during pre-operation labwork. She had some unusual symptoms but we never knew what they were from. After her diagnosis, we were able to find so much helpful information from the APS Foundation of America. This organization is an important resource for a condition that is under recognized and poorly understood in much of the medical community. After our daughter's death in 2007, we asked that donations be made to the APS Foundation of America so that they may continue their efforts. Thanks for your help and support!

The Great!

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

I appreciate the help and support that this organization offers. APS is a very serious condition that needs more understanding, awareness, and attention in the medical community. It is more than just blood clots, strokes, and pregnancy complications.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 3, 2010

more

June 3, 2010

I have been a part of APS for a little under a year. They have provided numerous resources to myself and my father as to his condition. I have been befriended by many and have used their resources to give my father a better quality of life.

The Great!

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

my purchases to help the organization with finances. I have also gotten a lot of information from their facebook group.

Ways to make it better...

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

not do anything! It runs perfectly the way that it is.

More feedback...

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

the amount of information that they provide about this condition

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

Tina and she is AMAZING! We are both from Wisconsin and have a lot of common.

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

help more people. They could put money into more research and become an even larger support group!

Ways to make it better...

there is nothing they could do better for me.

In my opinion, the biggest challenges facing this organization are...

Money

One thing I'd also say is that...

Every person that I've had the pleasure of speaking with from APS have been professional and very understanding. It feels as if I'm part of a huge family.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 3, 2010

more

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

More feedback...

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

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  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
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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