Volume 5 of out Newsletter, "Antiphospho...What?" is available for download!

Volume 5 of out Newsletter, "Antiphospho...What?" is available for download!

written by the APS Foundation of America, Inc. Enjoy!!! :)

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

We still are looking for articles, book reviews, etc...please email us for more information!

HYDROXYCHLOROQUINE - EVERYTHING OLD IS NEW AGAIN!

HYDROXYCHLOROQUINE - EVERYTHING OLD IS NEW AGAIN!

By: Gale McCarty, MD, FACR, FACP. Hydroxychloroquine (HCQ, or its trade name-Plaquenil) has a long and honored history of use in systemic lupus erythematosus (SLE) as a general medication to decrease activity of the immune system and decrease symptoms. For years it has been approved for use by the FDA for lupus and rheumatoid arthritis, and has been used most frequently for skin and joint manifestations. It is considered a mainstay of therapy for any patient with SLE by many lupus experts and rheumatologists. It has many mechanisms of action, some related to decrease in the activity of the immune system, and some related to effects on blood clotting mechanisms. HCQ belongs to the class of drugs call anti-malarials, which includes Chloroquine and Atabrine. (This does not mean that anyone thinks that SLE or APS is caused by the agent that causes malaria-like most discoveries in medicine, it was the chance observation that patients with some autoimmune diseases who got anti-malarial drugs to prevent malaria when traveling to likely areas of infection noted their symptoms improved on HCQ). One of the most complete and excellent reviews of all the literature on the anti-malarials to which all patients and their physicians are directed is Dr. Dan Wallace’s Chapter 59 in the Wallace-Hahn Dubois’ Lupus Erythematosus textbook. Another excellent review on APS therapy in general has been published by Dr. Robert Roubey.

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

INR Monitoring in Patients with Antiphospholipid Antibodies with Finger Stick INR Machines.

INR Monitoring in Patients with Antiphospholipid Antibodies with Finger Stick INR Machines.

by: Stephan Moll, MD. A superb way to monitor INRs (International Normalized Ratio) in patients on oral anticoagulants who do NOT have antiphospholipid antibodies (APLA) is though use of “point of care instruments”, where the INR is tested on blood from a finger stick. This method gives fast results and is used by many physicians’ offices and by some patients at home. However, in patients with APLA on oral anticoagulants these instruments may give inaccurate readings.

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

Are Natural Alternatives to Warfarin Safe and Effective?

Are Natural Alternatives to Warfarin Safe and Effective?

Written by: Randy Rauber, Pharm.D Candidate
University of Colorado Health Sciences Center. Reviewed by: Al Lodwick, RPh, MA. Is there any

evidence to support the use of herbal supplement “blood thinners” in patients with antiphospholipid antibody syndrome (APS) as natural alternatives to Warfarin?

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

APS in the Community

APS in the Community

written by Seren Estrada. On April 22nd the APSFA made an appearance at the annual March of Dimes WalkAmerica event in Springfield, Virginia.

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

MO-KAN Spreads APS Awareness

MO-KAN Spreads APS Awareness

Written by Dana Stuart. “Mo-Kan” is a phrase commonly used in the Missouri-Kansas region to describe various missions or goals that Missouri and Kansas businesses and residents CAN accomplish together. Frequently used for public service announcements, advertisements, and other miscellaneous uses, “Mo-Kan” has become the unofficial slogan for several alliances, which have formed for some very worthy causes. Now “Mo-Kan” spreads APS Awareness!

http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf

June is APS Awareness Month

June is APS Awareness Month

The Proclamation is a call to action for governments around the world to increase their financial support for APS research, awareness and patient services.

Each year, the APS Foundation of America, Inc (APSFA) will revise the Proclamation to reflect the emerging issues that people with APS around the world must face every day. The Proclamation serves to give a single voice to all individuals affected by this devastating and debilitating chronic disease.

Please join the APSFA in urging your government to adopt and make June APS Awareness Month.

WHEREAS, The APS Foundation of America, Inc. has declared June as National Antiphospholipid Antibody Syndrome (APS) Awareness Month and is educating the public and medical community about this clotting disorder and is urging people to "Get in the Flow”; and

WHEREAS, APS is the major cause of young strokes, many miscarriages, both arterial and venous thrombosis, and heart attacks. It has been estimated by some doctors that one third of all of young strokes (defined as under the age of 50) are due to APS. Some doctors believe that 1 in 5 of all Deep Vein Thrombosis (DVTs), Pulmonary Embolisms (PEs), and even worse, amputations are due to APS. And it is believed that 40-50% of patients with Lupus also have APS. Women are more likely than men to be affected by APS. Some estimates say that 75% to 90% of those affected are women. In obstetrics, it is estimated by some doctors that up to 25% of all women with 2 or more spontaneous miscarriages have APS; and

WHEREAS, the APS Foundation of America, Inc is working to bring a national attention to APS as a common factor in multiple miscarriages, thrombosis, young strokes, and heart attacks is vital in order to bring a joint effort to research, funding, early detection, and eventually, prevention and cure for APS; and

WHEREAS, the mission of the APS Foundation of America, Inc. is to offer understanding and support to individuals, family, friends, and care givers of APS; to offer information about and education on APS; to support research regarding APS by keeping the latest information available and referring people to such agencies who do research; to raise funds to provide information and education through public donations, grants, fundraisers, sponsorships, and bequests; and to bring national focus to APS in the United States.

NOW, THEREFORE, BE IT RESOLVED that June is hereby designated as APS AWARENESS MONTH on which the APS Foundation of America, Inc call for increases in public and private sector funding for medical research on APS, targeted education programs for health professionals, patients and the public, and worldwide recognition of APS as a significant public health issue.

Proclaimed This Day, 1 June 2007

Remember Mother's Day!

Vibrant Tulips				Natural Wonders
Clear Day		Stunning Beauty		Pink Kalanchoe		Brighten Your Day
Help support the APS Foundation of America Your generosity has come in the form of donations, volunteering, fundraising efforts, and special event participation -- for that we can never thank you enough. When it comes time for you to show mom that you're thinking of her, we hope you can keep the APS Foundation of America in mind. As part of a new fundraising initiative, when you purchase flowers and gift baskets online from our Flower Petal.com website, you will receive delivery at no additional charge, and 12% of the proceeds are sent to the APS Foundation of America. In fact, you can visit http://apsfa.flowerpetal.com any time of the year to send flowers and gifts for birthdays, graduations, anniversaries and holidays -- with every purchase you make, you will be supporting our efforts. Thank you for your continued support.

APSFA is looking for volunteers

Hello,

The APS Foundation of America, Inc is a volunteer run organization. Without the people who run things behind the scenes, the APSFA could not provide to you the services that we do. If you are not familiar with the services we have to offer some of them are: a private online support forum which has hundreds of medical articles posted on a monthly basis, our extensive website that is constantly being checked for accuracy and updated to ensure our information is current, our informational brochures and other documents available for download, over a thousand of related links on our links pages, and a list of doctors in the USA who were recommend by other APS patients.

This time of year is extremely overwhelming for us because a lot of legal paperwork needs to be filed for our taxes and each state requires that we renew our applications so we have to focus on those. Unfortunately in doing so, we end up short in other areas that are important for continued success of the foundation.

We are currently looking for people who are willing to volunteer their time and talents to the APSFA to help us with things behind the scenes. Some of the areas in which we need assistance are as follows in no particular order

• Grant Writing
• Writing Newsletter Articles, including patient stories
• Writing Press Releases
• Writing Articles for public magazines such as Woman’s Day, Good House Keeping, etc.
• Making podcasts and videos dealing with APS
• Making Public Service Announcements for TV & Radio
• Attending related seminars/conferences
• Attending local Health Fairs
• Contacting Hospitals & Related Agencies
• Fundraising

If you are interested in volunteering to work with the APSFA in any of these areas or have any other suggestions, please email us at apsfa@apsfa.org and let us know. If you are a forum member, please also let us know your username. We will be setting up a special private area on the forum for the volunteers to share ideas and chat with each other.

Thank you for your time and continued support.


APS Foundation of America Staff
Tina, Heidi & Todd

APS Foundation of America, Inc

CoaguChekXS Strip Insert

CoaguChekXS Strip Insert

Literature clearly states that this machine has problems with APS patient and patients with the Lupus Anticoagulant. This is for the CoaguChek, CoaguChekS and CoaguChekXS. Please call technical support at 800-428-4674 for more information. Those using this machine should be getting vein draw comparisons at least every 6-8 weeks.

http://www.apsfa.org/docs/XS%20Strip%20Package%20Insert.pdf

Michigan Seminar Summary, Notes and Pictures (Posted by Heidi)

"Breaking the Barriers: Blood Clots - Now What?"

This is my post on how the seminar went. it will probably be long, so please bear with me.

First let me say that if you have an opportunity to attend something like this, PLEASE try to make it there!! It was very good, informative and really a chance to get to ask some questions you may have to specialists. And, you will meet others with similar problems in your area, and how comforting is it to know that you are not alone??

Todd and I had about an hour and a half drive to get to Lansing and of course, we got up late...that is just us. But we got there in record time thanks to Todd's lead foot that he pulls out in times of emergency lol

When we got there, we had about 15 or so minutes to set up the table (APSFA was able to get a table...I think Lovenox was supposed to come and backed out...which was great for us to get out there like that!!) Then the seminar started.

First was an introduction from a Dr. John Penner who is a Professor for the MSU Department of Medicine as well as the Director of the Adult MSU Center for Bleeding and Clotting disorders. He also sees patients and I will be adding him to our dr list this weekend if he's not already there. He was very good from what I heard. He breifly explained clotting and introduced the seminar.

The next speaker was Dr. Roshni Kulkarni and she is the Director of the Division of Blood Disorders for the CDC as well as a Professor at the MSU Department of Pediatrics. Her part was titled "What are blood clots? Why and how do they form?" She had some excellent slides with animations on how the blood clots form and what happens with the different clotting disorders, such as APS and Factor V Leiden. Very interesting, and I learned alot from her presentation. She also said she worked for the Red Cross...not that that matters, but I wrote it down to tell Tina lol

Next up was Dr. Stephan Moll who is the Director of the University of North Carolina Thrombophilia Department as well as the Chair of the Medical and Scentific Advisory Board for NATT. He spoke twice, once before the break and once after. The first time he spoke it was supposed to be "Who is at risk for inherited and acquired clotting disorders" However it was really about Blood clots in general and how to prevent them and treatment. He was a very good speaker. Very personable and got the audience involved. He also added some humor in his slides, which was good because it was a long day.

Dr. Moll had added Todd into his "Lecture" as well. We had been in contact with him before hand and I sent him a picture as well as Todd full story...and I was impressed later on to find out that he actually read the whole thing because he spoke about a few different things that were on there (Todd's PFO, his TIA's, DVT, and Sticky Platelet Syndrome) He also mentioned APSFA a couple of times, and the FVL page a lot!! But he is the med advisory for the FVL page...so understandable.

I think Dr. Moll was the best speaker they had, hands down.

OK, then we had a Q&A time and a break. There were alot of interesting questions asked, none about APS specifically. and Dr. Moll answered most of them.

Next was a very inspirational personal story from a woman named Susan Mohr who is from Michigan, has FVL and had two DVT's...one in each arm. She ate right, was healthy, exercised, etc...and now she can barely do anything because of the risk of her forming another clot in her arms. She really broke down what it's like to have gone from a healthy indivudual to having a clot, and I plan on trying to get in touch with her and tell her that her speech really opened my eyes. They video taped the entire seminar and will eventually put it on a website...when they do, I will share it with you all, and her segment is a MUST see, esp for family members and caregivers. I had tears in my eyes. It was excellent.

The Role of Genetics was next. The speaker was Dr. Ajovi Scott-Emaukpor who is a Professor for the MSU Dept of Pediatrics as well and the Director of the Pediatric MSU Center for Bleeding and Clotting Disorders. His part mostly talked about the inherited clotting disorders, so it was mostly on Factor V Leiden. If Todd had FVL then I may have payed more attention, but the technical stuff really bored me...sorry to say. And he seemed to have not seen his slides prior to talking, he had to pause and read each one. I did notice that.

Dr. Moll's second lecture was next and he spoke about more treatment, who is at risk, and women's health issues. Again, it was mostly about FVL. But he did speak about some about nattokinase (which he does NOT approve of!!) and also the different birth control options and the risks.

Next was the most boring part of the lecture. Not because of the topic...it was running long, and it was lunch time and the woman had a delayed kind of speak that was just monotone and frankly hard to sit through. I am probably being too critical, but I was sitting there starving and was like, ok lady...speed it up. She was Dr. Renuka Gera, a professor for the MSU Department of Pediatrics and also the Associate Chair for Pediatrics. She spoke on Kids and Blood Clots. Some of it was interesting, and I will post another post with my notes in bullets and also some other things and pictures, but for the most part it was a snooze fest for me...but, I don't have kids and supposedly APS isn't "inherited".

Lunch was next and since Todd and I were basically "staff" we got to sit at the reserved table with the people who organized the event. They were both very nice, and we spoke about how we started the foundation and how todd was diagnosed and some other things about the seminar. About half way into our lunch, a woman from ProTime came to sit with us...very interesting talking to her. She basically said that the INR machines DO NOT work for APS patients, and that her company tells peple that and they choose to get them anyways and rish their lives...DUMB!!! Then she said she has family members calling her and saying, you knew this machine didn't work for this disease and you sold it to them anyway!! Well, the patient was well aware at the time of purchase, and in some cases the family members were calling because the family member had died. Scary stuff folks. Just say no to those machines! And this is straight from the representative's mouth!

After lunch we had some time to speak with some people who were visiting the tables. The only tables there were us, Probst compression stockings, Protime and there was NATT, Coumadin, Lovenox and ClotCare info all on one table. We gave out alot of brochures, booklets, newsletters and got a few people to sign up for our email list.

After the break was another Q&A session...more good questions, none APS related. Todd spoke up about people taking their medical information with them while traveling. They were really pushing for the patients to be pro-active in their care, and demand better care. If you don't feel they are doing enough, speak up!! Which is what the APSFA believes in as well!

The next speaker was Karen Boyd who helped to put the seminar on and she is from the MSU Center for Bleeding and Clotting Disorders. She is a social worker, and her speech was wonderful! All about patients and how they are treated, and how a good doctor who honestly takes the time to care and treat the patient makes all the difference. She was another one who when they put it online, it's a must see, IMO anyways. She had an Acronynm (?) for SPEAK UP and I am going to try to contact her to get what that was so I can post it. It was really good, but I didn't write it down.

The final speaker was Kathy Reed from NATT. She had a good talk about how she is a patient with FVL, and also a mother of a daughter with FVL. She also shared some inspirational quotes and spoke about NATT.

And then there were final Q&A and it was done. Afterwards, people were able to go up and have one on one time with the doctors and speakers. So while I packed up our table and spoke with the organizers a bit, Todd waited to talk to Dr. Moll and Kathy Reed.

And then we left...and headed for home!

It was a LONG day...but very very educational! I learned alot that I didn't know. And some stuff that I already did know, but that's ok too!

Ok, if you hung on this long, thanks...the next post will have bullets of my notes and pictures!

Here are my notes...

• Thrombosis is the most major medical problem in the USA.
• There are 1 million cases of DVT or PE per year in the USA.
• Thrombosis occurs in 1-3 of ever 1000 people.
• Factor V Leiden is the most common inherited blood disorder, 1/4 of all people who have had a blood clot carry the FVL gene.
• Thrombophilia = Thrombo (to form a clot) & Philia (love/affection/obsession) So Thrombophilia is love to form a clot.
  
• Sticky Platelet Syndrome was found in Michigan and most people dx with it are in MI or TX because the student or partner of the person who found it now lives in TX. lol
• There are no clinical studies for SPS.
• The woman from the CDC said that Senators listen to patients. and that we should contact our senators.
  
• In children, 50% of all clotting disorders are genetic
• APS is an aquired clotting disorder
• Nattokinase has no clinical trials, is NOT FDA approved and do NOT count on it working.
  
• There is a petition to the FDA to ban all 3rd generation (Yasmin, the patch) BC pills because of the clotting risks.

And that was all of my notes.

A few other things...Dr. Moll was great. he really impressed Todd and I, and we must have impressed him because he wants to work with us and the APSFA in a type of collaboration, which will REALLY help to increase our visibility and get us out there. He mentioned us when he was asking people to donate to NATT, which was good. He came up to us right away and shook our hands and said he was glad to meet us and that we should sit up close. Which was so he could point todd out to the audience as he talked about him lol. He also came and found us at lunch to get a picture with us for the NATT newsletter I assume. The picture is below as well as a picture of Todd and our table and Dr. Moll's slides with Todd on there! LOL

I will be adding the pictures to the website soon, they are pretty boring and just of the speakers.

Again, I cannot stress enough that if you are able to attend one of these seminars You should do so! And bring a family member along too!

Now for the pictures:

WI, IL & IN Members: Improving Patient Quality of Life

Improving Patient Quality of Life
Saturday, May 5th, 2007 - Chicago, IL

Hosted by:

The National Alliance for Thrombosis and Thrombophilia (NATT), The International Self-Monitoring Association of Oral Anticoagulated Patients (ISMAAP), and the Anticoagulation Forum

Location:

Chicago Marriott Downtown
Magnificant Mile
Chicago, IL
Ballroom III, 7th Floor
540 N. Michigan Ave.
Chicago, IL, 60611
http://marriott.com/hotels/travel/chidt-chicago-marriott-downtown-magnificent-mile

Agenda:

Click here to download the agenda http://www.nattinfo.org/acforumprogram.pdf.

Registration Information:

Elizabeth Varga
nattseminars@yahoo.com
614-355-3607

The APS Foundation of America, Inc is making arrangements to attend.

PA Members: Blood Clots & Clotting Disorders

Blood Clots and Blood Clotting Disorders:
Key Issues in Diagnosis, Treatment and Prevention
Saturday April 28, 2007

Hosted by:

The National Alliance for Thrombosis and Thrombophilia in conjunction with Western Pennsylvania Hospital / Western Pennsylvania Cancer Institute and University of Pittsburgh / Laboratory Institute for Transfusion Medicine

Location:

Sheraton Station Square Hotel
300 W. Station Square Drive
Pittsburgh, PA, 15219
412-261-2000

Agenda:

Click here to download the agenda: http://www.nattinfo.org/PittBloodClotSeminar.pdf.

Registration Information:

This seminar is FREE but registration before April 20th is requested.

Please complete the registration form and return immediately. You may also register by sending an email to: nattseminars@yahoo.com or by calling 412-578-4355.

The APS Foundation of America, Inc is making arrangements to attend.

PA Medical Professionals: Blood in Motion 2007

Blood in Motion 2007
Symposium on Thrombosis and Hemostasis featuring Women Issues
Friday April 27, 2007 - Saturday April 28, 2007

Hosted by:

The Western Pennsylvania Hospital and Western Pennsylvania Cancer Institute with University of Pittsburgh and Institute for Transfusion Medicine

Location:

Sheraton Station Square Hotel
300 W. Station Square Drive
Pittsburgh, PA, 15219
412-261-2000

Agenda:

This program is intended for Internal Medicine and Family Practice Physicians, Obstetricians and Gynecologists, Hematologists, medical and OB/GYN residents, physician assistants, nurses, medical students and anyone involved in the patient care, prevention, diagnosis and management of venous thromboembolic disease.

Click here to download the agenda: http://www.nattinfo.org/bloodinmotionprogram.pdf.

Registration Information:

Registration fee includes tuition, course syllabus, continental breakfast, breaks and luncheons. All cancellations must be received in writing. The registration fee, less $50.00 administrative fee, is refundable if your request is received by April 14, 2007.

Physician: $150.00
Allied Healthcare Professional, Others: $75.00
Fellows or Residents fee waived

Click here to download the agenda and registration form http://www.nattinfo.org/bloodinmotionprogram.pdf.

The APS Foundation of America, Inc is making arrangements to attend.

MN & WI Members: Blood Clots and Blood Clotting Disorders: An Education Seminar

Blood Clots and Blood Clotting Disorders:
An Education Seminar
Saturday April 21, 2007

Hosted by:
The National Alliance for Thrombosis and Thrombophilia (NATT) and the Hemophilia & Thrombosis Center, University of Minnesota Medical Center

Location:
Embassy Suites Hotel
2800 American Boulevard West
Bloomington, MN 55431
952-884-4811

Agenda:
Click here to download the agenda: http://www.nattinfo.org/UofMNThrombosisEducation.pdf.

Registration Information:

This seminar is FREE but registration before April 6, 2007 is required.

Please call Fairview On-Call at 612-672-7272 to register.

The APS Foundation of America, Inc is making arrangements to attend.

What is “Micro-Clotting”?

What is “Micro-Clotting”?

By: Thomas L. Ortel, MD, PhD
Simply put, micro-clotting, better referred to as “microvascular thrombosis”’ describes blood clotting that is occurring in some of the smallest blood vessels in the body.

http://www.apsfa.org/docs/APSFAVol4Winter2007.pdf

PhoneRaiser - Fundraiser

We have started a new fund raiser for 2007. We are collecting used cell phones. The average American family has 3 old cell phones in their home. This is another easy way to donate to and support the APSFA without making a monetary donation. You can send us your used phones, or set up a collection box in your area.
Click HERE for more information.

APSFA Exclusive Holiday Ornament

We are offering this exclusive holiday ornament on our CafePress site. The ornament will feature a different snowflake every year, so this is truly a collector's item. The ornaments are $8.00 and $2.00 from each purchase goes to the APSFA. This design is only available until Dec 31, so you'll need to act fast!

http://www.cafepress.com/apsfoundation/1952386

2006 Holiday Giving Tree!

The holiday Giving Tree at the APS Foundation of America, Inc holds a special meaning for the members of the APSFA and the community it serves.

Each ornament and present signifies a donation made to the APSFA in the name of an individual or group honored at this special time of the year.

This donation will enable us to keep our unique non-profit organization operating and help promote awareness of Antiphospholipid Antibody Syndrome.

http://www.apsfa.org/givingtree.htm

APSFA in Stroke Connections!

We made it into the American Stroke Association's Stroke Connection Magazine. The November/December 2006.

I call that a nice sized ad! :)