Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
37 Reviews
1234.675685
Previous | 1 2 3 |
Write A Review
June 20, 2011

more

June 20, 2011

I was diagnosed w/APS 10 years ago. I've had multiple DVT's and PE. I've never been to a doctor that seemed interested in answering my questions and most of the info I have came from my own research. This disease is scary and I've never had anyone to discuss my fears or answer my questions until I found this page. For years I've felt like I was all alone in this as family and friends simply do not understand how devastating APS really is. Now I have a place to go for info and support. I'm suddenly not alone anymore.

The Great!

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

Facebook

Ways to make it better...

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

none

June 6, 2011

more

June 6, 2011

I was diagnosed with APS in 2002. I had never heard of APS until then.
I started searching for information, the library, the internet. I began to understand what I had but found no one else with this disease.
Frustrated I searched the web looking for anyone who could understand and help
me.
Finally I came across the APS web site and learned that a few more people had this disease. APS has given me the support I need to go on. It has offered information on drugs, genetic research, and treatments for APS. It has helped my family understand the disease. I don't feel alone anymore!

The Great!

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

Dealing with family and friends. I reccommend it to everyone I meet. It helps others understand the disease

Ways to make it better...

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

See that more advertising would be done. Most people (including some doctors) know very little about APS. TV campaign: 6 minutes, some health programs (Dr. OZ)

More feedback...

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?

Quite well

How did you find this group?

the internet

When was your last experience with this nonprofit?

2011

February 3, 2011

more

February 3, 2011

I was diagnosed with APS in 2005. There were only a handful of physicians who knew about, let alone understood, the full impact this has on my life, and will have on my life, until my last day. Suffering with this not-well-known disease was difficult. I felt alone. I am thankful to have found the APS Foundation to have the support and resources to help me, my family, and even my employer, help understand this debilitating, silent, invisible disease.
As a patient, the support and understanding has helped my family and me better understand and cope with the sudden limitations placed on my life. The Foundation members are thoughtful, compassionate, educated, up-to-date, and have their "finger on the pulse," of any/all new updates we, as sufferers of this disease, need to know. Additionally, the APS Foundation is an excellent resource for any aspect of APS -- the patient or physician both can utilize. I am thankful for the foundation and its hard work and dedication to the sufferers and the cause.

The Great!

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

Being better able to cope with my diagnosis. Their counseling services and disease education helped my family understand the disease, and my limitations better. -- The same is true for my employer who was able to accommodate my "disability" by following my physician's recommendations. Without the APS Foundation, I would still be trying to convince my family and employer about my "invisible disease" and the limitations it places on me. With the APS Foundation's help, I am able to function in the world.

Ways to make it better...

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

Air a special on television: 20/20 and/or "60 Minutes." More media attention needs to happen. The more people who become aware, the easier it will be on those of us suffering from the disease. We "look" and "sound" "normal," the vast public needs to be educated about this disease. I would volunteer my story. It has tried to kill me twice, but I am still here!

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

How did you find this group?

On the internet.

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

To communicate with others suffering with the same disease, not to feel alone.

When was your last experience with this nonprofit?

2010

January 24, 2011

more

January 24, 2011

When my husband found out he had APS there was not a lot of information about it on the web. The APS foundation has not only been a great source of information, but because it's such a rare disease it's helped us not feel so alone.

The Great!

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

Information

Ways to make it better...

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

None

January 22, 2011

more

January 22, 2011

I was diagnosed with this rare blood disorder a little over 20 years ago. Because it is rare, it is difficult to easily find reliable information or to meet people who share this same diagnosis. Through this organization's online community, I have learned more about my illness and gained friends that are able to offer support/advice when I am having challenges.

The Great!

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

In receiving a minimum of weekly postings from their Director, Tina Pohlman.

Ways to make it better...

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

hope to see it continue to grow in staff and services.

June 16, 2010

more

June 16, 2010

The APSFA has been a great support to me and my family. I have learned more from their website, support forum and information packet they sent from me. I have found the staff to be super friendly and really caring about me. They have helped me a lot. I love that they send their newsletter out by email for free. Those are always informative and many of their medical advisers write in them everytime. Their articles are cited and my doctors have used the references to help me get better care. Words can not explain how much they have helped me. Thank you!

The Great!

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

the great service they have provided and excellent information and caring they have provided. I thank them for my life.

More feedback...

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

everyone is so honest, friendly and helpful and everything is cited. My doctors really take their information seriously.

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

the staff will go out of their way to help you to answer your questions and are willing to send you information to bring to your doctors.

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

run a large campaign educating the public & medical professionals.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 5, 2010

more

June 5, 2010

I was just recently diagnosed with APS and like many people before me, came to the internet looking for and finding the answers to many of my questions at this web site. If it wasn't for all the many wonderful people whom were there to chat with, who understood and know the pain and confusion that accompanies this disease,I am not sure what I would have done. So I thank you APS Foundation for being there for me.

The Great!

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

That they where there for me. From the personilised greeting to any time I just need to vent, or need answers to my many questions.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 4, 2010

more

June 4, 2010

I was diagnosed 3 yrs ago with this disease due to dvts in both my legs and a clot in my arm. My docs took so much blood from me over a week doing test after test and found that I have APS. I didn't understand the severity of what I have. My docs didn't know that much about it. So i had to result to the internet to find out more about this disease. They were one first website and went to it. I found so much information and was able to get more answers that I was able to teach my docs something. I took in articles in so they could learn how to treat me. I am not a Leper and thats how the docs made me feel. I also learned not to have fingerstick blood test for the blood thinner i was on. And to seek a rheumi to get more answers. For the people who run this organization I give them alot of credit for giving info that saved my life. If it wern't for them I would probably be dead and buried right now. Thankyou Aps foundation of America. Keep up the good work and keep it going and save more people like me.

The Great!

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

MY LIEF

Ways to make it better...

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

no they are doing such good work Keep it up

More feedback...

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

when I joined their forum. The people are so nice and helpful and care

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

Awesome

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

help get the cure going for this disease

Ways to make it better...

why chane

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

nothing

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

June 4, 2010

more

June 4, 2010

In August of 2009 I had the worst headache I had ever experienced in my life. I'm not a napper, I don't lay down unless I feel awful. Over the weekend of the headache, I was in bed most of the time. I finally went to the emergency room where they discovered that I had blood on the brain. Further tests revealed that I had a blood clot in the vein that drains blood from the brain. In February of 2010 I was diagnosed with Antiphospholipid Antibody syndrome. I didn't know anything about the syndrome so I went to the Internet to find answers. I found the APSFA and their support forum. I am thankful because this disorder is such a mystery and the APSFA had many answers that my doctors did not. I have found the APSFA very helpful and the support forum great because you can share your experiences with others who have the same symptoms and problems.

The Great!

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

I have gained knowledge that has helped me to understand and speak with my medical team with confidence.

Ways to make it better...

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

I would try to get more people involved.

More feedback...

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

The APSFA has links to so many websites and articles that can help me talk to my medical team with a degree of knowledge that I would not have if I had not found this nonprofit.

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

The staff and vounteers are all greta and welcoming and helpful people.

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

If this organiztion had a 10 million bucks it could help find a cure for APS.

Ways to make it better...

My experince would have been better if I had found out about the APSFA earlier.

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

There are not enough volunteers to help the staff.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 4, 2010

more

June 4, 2010

When I tested positive for the antiphospholipid antibodies a couple years ago, I had no idea what I was dealing with. My "team" has included an excellent rheumatologist and the APS Foundation of America. Because of the honest information I received there, I learned questions to ask my rheumatologist, the most current research on treatments and, maybe for me, hope that I could go on and lead a normal life. Yes, it would take monitoring and medication, but I could work and still be me. Since then, I frequent the site often and have tried to be an encouragement to others as they have been and continue to be to me. I would recommend this foundation to anyone dealing with aps.

The Great!

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

Support, encouragement and accurate information.

Ways to make it better...

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

probably change nothing. I love the way the new website is easily maneuvered.

More feedback...

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

The information and support I've received.

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

Honest and welcoming.

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

Sponsor research, disseminate information, sponsor education seminars for physicians.

Ways to make it better...

Can't think of a single thing.

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

Funding and lack of consensus on optimal treatment among medical personnel.

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

This organization exists for all the right reasons.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

Previous | 1 2 3 |
Write A Review

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

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
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers

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