Newly Launched Psoriatic Arthritis Resource Puts Patients on PATH to Better.........

[makeitgoaway]

Newly Launched Psoriatic Arthritis Resource Puts Patients on PATH to Better Physical and Emotional Health
Monday August 7, 7:22 am ET
Novel program developed as new survey finds patients experience misunderstanding, embarrassment due to disease symptoms


PORTLAND, Ore., Aug. 7 /PRNewswire/ -- For people living with psoriatic arthritis, a disease characterized by pain, stiffness and swelling in and around the joints, physical symptoms may not be the only source of pain. According to a new survey released this week from the National Psoriasis Foundation, people with psoriatic arthritis suffer psychological effects due to the impact of psoriatic arthritis on their appearance and the social stigma associated with physical symptoms of the disease. Psoriatic arthritis was also found to impact everyday life. To address the needs of people with psoriatic arthritis, the National Psoriasis Foundation is introducing the Psoriatic Arthritis Total approach to Health (PATH), a program providing tools and information for managing the physical and emotional aspects of the disease.
"The National Psoriasis Foundation hopes PATH becomes an important resource for people with psoriatic arthritis, many of whom are striving to live each day to the fullest despite the physical, emotional and social effects of this complex disease," said Gail M. Zimmerman, President and CEO of the National Psoriasis Foundation. "The PATH program recognizes the often serious nature of psoriatic arthritis and the myriad issues faced by people with the condition."

PATH: Addressing a Need

The PATH program was developed by the National Psoriasis Foundation in partnership with Abbott. The program content was designed with guidance from a multidisciplinary panel including a rheumatologist, psychologist, dermatologist, dermatology nurse, cosmetology instructor and people living with psoriatic arthritis. The centerpiece of PATH is an online resource on the National Psoriasis Foundation Web site ( http://www.psoriasis.org/PATH ) featuring tips from experts on reducing stress, exercising, eating well and incorporating other healthy living tactics into everyday life, to help relieve the impact of psoriatic arthritis. The site also includes tips on skincare and style.

An educational seminar following the National Psoriasis Foundation® 2006 National Conference on August 6 in Portland, Ore. brought PATH concepts to life. At the PATH seminar, the meeting attendees participated in interactive breakout sessions and demonstrations addressing healthy living, exercise and physical activity, stress management, relaxation and meditation, and a tutorial on skincare and style.

"I have witnessed firsthand the effects of psoriatic arthritis and how patients need more than medicine alone to help manage this chronic inflammatory condition," said Lester Miller, M.D., rheumatologist and Adjunct Associate Clinical Professor of Medicine, Division of Immunology and Rheumatology, Stanford University School of Medicine. "It is essential that healthcare providers form a partnership with patients to facilitate a comprehensive treatment plan that addresses the medical, emotional and social impacts of this potentially crippling disease -- psoriatic arthritis."

"For many years, starting when I was in my teens, psoriatic arthritis dictated how I lived my life. Whether I was too embarrassed to wear clothes that would show my arms and legs or stuck on the sidelines unable to enjoy sports because of the pain in my joints, psoriatic arthritis defined who I was," said Annie Escalona, a psoriatic arthritis patient for more than 30 years and a speaker at the PATH event. "That's why I am so excited about PATH, because it is a program that offers practical guidance, but more importantly, hope and empowerment for people like me to take control of their disease."

Psoriatic Arthritis Survey: Disease Symptoms Hurt in More Ways Than One

New results from the National Psoriasis Foundation bi-annual survey of 405 adults with psoriasis or psoriatic arthritis, one in three of whom had been diagnosed with psoriatic arthritis (n=165), show that psoriatic arthritis takes a significant toll on many aspects of a person's life:


-- Nearly half of respondents reported that their psoriatic arthritis
caused them large problems in everyday life.
-- Nearly two in three people diagnosed with psoriatic arthritis have
avoided professional services like haircuts, manicures and skin therapy
to prevent unwanted stares and embarrassment.
-- One in three people indicated that they were refused treatment by a
beautician, barber, skincare specialist, manicurist or acupuncturist.
-- Two in three respondents were either overweight or obese, conditions
that can cause undue stress on a person's joints and exacerbate the
physical symptoms of their disease.


The National Psoriasis Foundation conducts survey panels twice each year to understand the experiences and opinions of people with psoriasis and psoriatic arthritis. These surveys help the Foundation gain awareness and document the impact of these diseases. The information is used to shape programs that meet the needs of the psoriasis community and to determine the need for additional research. The Spring 2006 survey findings included in this release were sponsored in part by Abbott.

About Psoriatic Arthritis

Psoriatic arthritis is a chronic (lifelong) inflammatory disease that can cause pain, stiffness and swelling in and around the joints. Psoriatic arthritis is related to psoriasis, a chronic skin disease that can cause dry, red, scaly patches on the skin. Common symptoms of psoriatic arthritis include pain and swelling in one or more joints, usually the wrists, knees, ankles, fingers or toes. When nails are affected by psoriatic arthritis, they may look like they are pulling away from the finger or toe and even have pits.

Psoriatic arthritis can result in irreversible damage to the joints and can cause permanent disability. Early diagnosis and treatment of psoriatic arthritis can prevent joint damage. In most cases, people with psoriatic arthritis develop psoriasis first, but some people develop the arthritis before they notice psoriatic lesions on the skin. It is estimated that between ten percent and 30 percent of people with psoriasis develop psoriatic arthritis.

About PATH

PATH is a patient education initiative developed by the National Psoriasis Foundation in partnership with Abbott. It is designed to support people living with psoriatic arthritis and their loved ones by providing them with information and tools to manage this complex disease. The program launched with a kick-off educational seminar on August 6 in Portland, Ore., following the National Psoriasis Foundation® 2006 National Conference. For more information on PATH please visit the Foundation's Web site at http://www.psoriasis.org/PATH .

About the National Psoriasis Foundation

The National Psoriasis Foundation is a patient-driven, nonprofit organization dedicated to improving the quality of life of the millions of Americans diagnosed with psoriasis and/or psoriatic arthritis, and their families. For more information, contact the Foundation, headquartered in Portland, Ore., at 800.723.9166, or visit http://www.psoriasis.org .




--------------------------------------------------------------------------------
Source: National Psoriasis Foundation

[ouchyk]

Especially for newbies dx with PA.

I have ton's of information to be brought back to our support group about diet, exercise, mind body connection as well as the facts of our disease. Every speaker was TOP NOTCH! I hope to see this program brought to every area in the US and beyond.

Hats off to Abbott & the NPF for providing this educational joint venture.

Karen

[wildflowerAnn]

I looked at the link that MakeItGoAway provided, and then went back to the home page and tried to find it from the drop down menus by topic. If this thread goes to page 50 in the next few months, how does a newly diagnosed PA person find this to read about PATH. I think it is an excellent, very informative new addition to the information section of this NPF website. Just wondering how a person can find it from the drop down menus.
Ann

[ouchyk]

Ann,

Sorry I'm confused?

I found it on the front page of the NPF at www.psoriasis.org and linked off of that without a problem. A lot of people who I met at the conference don't use the message boards but do use the website itself for valid information.

Also, when PATH goes on the road the NPF will most likely let it's membership know thru mailings, leadership etc. I'm hoping they come to Boston.

Its an EXCELLENT tool for the newly diagnosed offering credible up to date information from reliable sources.

Karen

[nesielheum]

I looked at the link that MakeItGoAway provided, and then went back to the home page and tried to find it from the drop down menus by topic. If this thread goes to page 50 in the next few months, how does a newly diagnosed PA person find this to read about PATH. I think it is an excellent, very informative new addition to the information section of this NPF website. Just wondering how a person can find it from the drop down menus.
AnnHello Ann,
I did not see a link to PATH from the drop down menus either, but there is a link to it on the homepage just after the words:

A holistic approach to psoriatic arthritis
Psoriatic Arthritis Total approach to Health (PATH)
offers tips on exercise, stress, nutrition and more. >>>Explore PATH<<< (http://www.psoriasis.org/PATH/)

[wildflowerAnn]

Thanks for pointing this out that it is on the home page news. For those who haven't read it, it is really well done. Not just great tips for PA, but also discusses taking care of P on the skin, including how to gently remove scales; and to only use sensitive skin products on inflammed skin. A few months back I used Eucerin facial sunscreen which never bothered me before, when I thought my face was clear and had a horrible flare on my face. Now, if I had seen this advice beforehand, I wouldn't have had to learn the hard way. There is mention of a new powdered form of foundation for the face. Anyone know more info about this? Anyway, I am very happy to see this great addition to the information section and feel contributions to support NPF are well spent donations.

[ouchyk]

Ann,

I'm glad you found it. :) I can't do the links like others can lol.

There was also a gal there from Nordstroms who was talking about shoes and how you can buy one size for each foot ( lot's of people have say size 6 on thier right and 6 1/2 on thier left for instance ) so I thought that was pretty neat, as well as clothing tips for those with PA, ie; pull up pants with elastic waist, and how they will tailor make clothing to make it easier to dress and for those who don't want to show thier psoriasis, hide it! I asked about using velcro instead of buttons as sometimes my hands dont cooperate and I need my husband to button my shirts for me.....and I tend to avoid button down for that reason. ( I do have a button puller but its a pain to use lol ).

The make up artist had tips for hairbrushes, and make up application using sponges cut in a V shape to make it easier to grasp for those who have PA in thier hands. There were handouts on assistant devices.

I am always a big fan of the mind-body connection. I will have to say although the Doctors who were there were great with that, no one can top Dr. Steve Shama who did a session at the conference with pain management, it was an entirely different way of dealing with stress & out of the entire weekend hands down favorite session.

I HOPE THEY HAVE THE CONFERENCE IN TEXAS NEXT YEAR!

Karen

[ouchyk]

Ann,

I will try to find out more about the foundation, to be honest I was more interested in the PA part of it all as that was to be the main thrust of the session....and I don't wear make-up ( but probably should! ), so I went elsewhere in my mind...probably looking outdoors as it was beautiful out lol.

Maybe they should have a session next year about P and make-up, scalp and hair care etc, the girl they had speak was incredible and knowledgeable her husband had both P and PA.

Oh, and I don't know where the conference will be next year, that was my plug for Texas lol. Right smack dab in the middle of the country, easily accesible from either coast ( the plane ride just about killed my PA )....and it's one place that I would love to visit!

Have a great weekend!
Karen

[seedoubleyou]

I HOPE THEY HAVE THE CONFERENCE IN TEXAS NEXT YEAR!


Awwwwww, shucks!!

As much as I'll admit I would soooooooo dig that, I have to say -- Texas is hot as you-know-where (ok, I'll say it -- THE PIT O' HELL!!!) @conference time. 104 degrees forecast AGAIN today, and contrary to popular belief, oh-yes-we-do have humidity in most parts of the state. Geez, was still 94 degrees last evening at 10:30 p.m. :eek: The heat here is just ... draining.

That said, I DO "second" the thoughts re: the effects of loooooooong flights on PA. (I'm back to that point where if I get still for 5 minutes, I have great difficulty getting up/initiating movement ... AARRGGHH!!) With that in mind, I was actually thrilled on behalf of our west coast friends, 'cause Lord knows, it had to be easier for them this year.

AND, therein lies the quandary -- ie, how to make it as simple/easy/affordable/comfortable as possible for ALL to get to the conference. *sigh*

K, we're just gonna hafta get you down here for a visit, girlfriend, in fall or spring ... deal?!?

[FlakeyMatt]

Who the heck would EVER want to visit there? :p


nanny nanny boo boo

[seedoubleyou]

SOMEBODY (a certain Pookie bear who shall remain nameless) (coughcoughMATTcoughcough) needs to get back to WORK!!

(okay, now there's more than just my 12 y.o. daughter rollin' eyes ... *giggle*)

[FlakeyMatt]

Okay okay In the interest of keeping this thread upon the topic it was intended to follow

I will not reply to the PREVIOUS reply to my post............


SO see this is NOT a reply I am dutifully at my desk trading stocks

So don't think I am not working or nothin'

and don't think this is a response or nothin' ;)

[seedoubleyou]

OMG!!

Mike was SOOOOOOOOOOOO right about that whole "ignore" thing!!!!


:p :D :p :D :p :D :p :D :p :D

[sparklingfire]

You two are cracking me up...and I so need it today. I'm feeling really down.

It's great to "see" you both hangin around here more.

Lots of Love,
Jen ;)

[PJ66]

You two are cracking me up...and I so need it today. I'm feeling really down.

It's great to "see" you both hangin around here more.

Lots of Love,
Jen ;)
Ditto that!!!!!

Polly

[seedoubleyou]

BIG, BIG HUGS, JEN!!

[FlakeyMatt]

OMG!!

Mike was SOOOOOOOOOOOO right about that whole "ignore" thing!!!!


:p :D :p :D :p :D :p :D :p :D

well of course nobody heard nothin' because I never replied to nothin'


Jeez some people really see and hear whatever the heck they want


perhaps is related to medications..............



*BIG WICKED GRIN*

[wildflowerAnn]

My sympathies to everyone who had to endure a long flight with PA. A long airplane flight is uncomfortable for people who don't have arthritis. I can imagine how uncomfortable it was.
Karen, thanks for the information about the clothing and what else was discussed in that session. Don't worry about researching for cosmetics. I don't wear them much at all now, but also believe in the mind/health connection and I think trying to look my best each day will help me feel more normal. I can ask my dermatologist about a safe foundation. Its the sunscreen in it that I want, and yet that is what irritates my skin.
PJ and Sparklingfire, sorry to hear you are having down days. I enjoyed Flakey Matt's jokes about Texas too. (Can't say I agree that this isn't an interesting state to visit, but have to agree that August in Texas is extremely hot and humid.)
I'm just very happy to see this new addition to the information section of the NPF site; and I'm happy to see the campaign for a cure fundraising status added to the site. I was wondering how much had been raised. I like the little bottle as a measure; and hope it is overflowing soon!
Ann

[nesielheum]

well of course nobody heard nothin' because I never replied to nothin'
Jeez some people really see and hear whatever the heck they want
perhaps is related to medications..............
*BIG WICKED GRIN*"I know that you believe you understand what you think I said, but I'm not sure you realize that what you heard is not what I meant." Where: I = Matt :eek: Liberties taken with a quote from Robert McCloskey :o
Go PATH (http://www.psoriasis.org/PATH/?PHPSESSID=e7bb116313e79af0d13497ba5f32c53b)

[seedoubleyou]

Did y'all see that??

That post by Tim just flew over my head!! :confused:

Ann, just ignore that sassy Pookie bear; we're still workin' on those manners!! :rolleyes: Where in TX are you??

Re: foundations, I'm VERY interested in the powdered mineral make-up. Am a former tanning devotee but can't tan anymore thanks to PA meds (which is probably a damn good thing). I have a lot of patchy discoloration on my face from frying myself all those years so need the coverage ... but my skin is VERY sensitive (like yours, it sounds) and I have trouble with the typical foundations. I'd love to try the mineral stuff but hate to make the investment as I'm afraid it'd end up in the discard box, along with all the other junk I've tried!!

[wildflowerAnn]

I live in San Antonio. I used to love to travel to Dallas and to Houston and the Gulf Coast and to the Hill Country. Texas isn't just tumbleweeds and rattlesnakes, contrary to what is usually shown in the movies! I also like foundation to even out my skin tone. Just a light application, but it makes me look nicer. I found a hairdresser who understands that what I have isn't contagious, and she does a nice job trimming my hair and making me feel human again. I have to wear pants now until I can get to the store and buy smaller underwear. I have trouble with weight loss and my meds ( a side effect of Cellcept) and I'll be walking in the yard and my underpants just fall off!!!!! My pants catch them until I can get into the house and take them off. I think I'm going to have to forget the alternative eating and drink those weight gain drinks, regardless of what is in them. Anyway, I like this part of PATH that discusses trying to look really nice every day as a way to lift up our emotional well being.

[Dulane]

I gotta say, I am really impressed with PATH's diet recommendations. And this statement:
Did you know? In a recent survey of people with psoriatic arthritis, two in three respondents were either overweight or obese. These conditions can cause undue stress on a person's joints and exacerbate the physical symptoms of their disease.

This is a PA diet plan that I can finally appreciate and I'm certainly glad to see NPF behind these recommendations. Nowhere does it say that processed foods are OK. Here are some of the tips and factoids:

Guidelines for a Healthy Diet

Eat a variety of foods. It’s important that your body gets all the essential nutrients and healthful substances that it needs to function properly. The nutrients we need are from eating a variety of meat, fruits and vegetables, dairy and grains are proteins, carbohydrates, fat, vitamins and minerals.

Eat regularly. Getting yourself on a schedule where you eat regularly throughout the day provides your body with an even flow of fuel that will help keep it functioning properly and you feeling energetic. For some, this means eating three meals throughout the day. For others, this may mean smaller, more requent meals.

Maintain a healthy weight. By maintaining a healthy weight, you feel good both mentally and physically, and can reduce your risk of developing health problems. Determining your healthy weight range depends on several factors, including body composition and body fat distribution. Be sure to set reasonable expectations for yourself in regards to your healthy weight.

Eat proper portion sizes.
One serving of meat - 3 ounces - is the size of the palm of your hand.
One serving of dairy - 2 ounces of cheese - is the size of a pair of dominoes.
One serving of vegetables - 1 cup - is the size of your fist.

Add color to your diet. Choose fruits and vegetables in a wide range of color to get the maximum nutrients, such as fiber and disease-fighting anti-oxidants.

Use sugar and salt in moderation.

Limit foods that are high in fat and cholesterol. All of us need a small amount of fat to build, strengthen and repair body tissue. But most of us eat the “bad” fat, which is mostly found in animal foods like red meat, processed meats like bacon, poultry, whole milk dairy foods and palm and coconut oils. (My edit - Not cold pressed virgin coconut oil. Here they are referring to what we get when we think we are getting buttered popcorn.)

Do not smoke and drink alcohol in moderation. Smoking and alcohol may make your treatment less effective.

Be supplement savvy. Although eating a healthy diet will guarantee you get the vitamins and minerals you need, supplementing your diet with a multivitamin will also help.

Good Tips from PATH

When you feel like cooking, prepare extra so you always have healthy food around to eat on your lower energy days.

Choose frozen entrees and canned soups that are low in sodium. Read the nutrition labels and limit your total daily sodium intake to less than 2,400 milligrams.

Consider pre-cut vegetables and fruits for healthy snack options.

http://www.psoriasis.org/PATH/files/healthy_tips.pdf

[ouchyk]

The nutrition part was sensible. Actually, the whole program would be benificial to those newly diagnosed or in need of a more holistic way of treating themselves.

They gave us handouts and worksheets which we have passed along to our support group in Boston PA or not everyone got a copy! It included diet, exercise, mind-body, and up to date information from a leading rheumatologist.

http://www.mypyramidtracker.gov/ is a place where we all can go for diets as recommended by path. There was NO one diet for PA, they told us about the fact there is no known diet to stop the possible progression of PA. nor was there any information given about " inflammatory foods ", as a matter of fact, from what I read here you would think that the last thing we should have is dairy and this is wrong according to the nutritionist and nurse. We all need calcium and the best way to get that calcium is thru dairy products. Of course there are other foods that we can have in it's place such as broccolli, cottage cheese etc ( I have a chart from my nutritionist as milk to me = blech lol ). Low fat milk is fine. Cheeses are fine. Dairy is fine. In moderation.

MOST of those in attendance for the session were of a good healthy weight which I think surprised the nutritionist, at least in the group I was in. One of the comments made was about remicade and the need for increased medication if someone was overweight as they rx by weight. And more importantly how if your overweight the medication doesn't work as well.

I was not interested in the psoriasis part of the session as much, but they did cite many publications regarding smoking and plaque psoriasis ( in men ) and also PPP and smoking. No publications about PA and smoking but we all know it's not a good thing for anyone's health.

Also, the PT told us to exercise every other day and not to do so when we are in a flare, what exercises to start with and which to continue on and the need to adjust as to how we are feeling. She was all over water therapy as in aqua therapy as your joints are not " taxed " . One great thing is that she talked about simple housework and how she considers that exercise! She was incredible, had a rheumatic illness as well, which as a sufferer I can appreciate.

Ann, I think mascara is make-up and I rarely even wear that! I think you're very wise to have your doctor compound something for you if you feel the need to wear it too. I think Steve left a link to compounding medicated make up somewhere on this site. They didn't give a brand name of the mineral cosmetics but I know I bought my daughter some ( she has acne at times ) and it works great for her altho pretty expensive. I know a few p peeps who use it as well and it looks fab. on them.

" I like this part of PATH that discusses trying to look really nice every day as a way to lift up our emotional well being." I agree as long as your comfy! They had a line of " itch free " clothing at the conference again I think Steve put up a link to it that might help a lot of peeps. Maybe they have some adjustable undergarments lol so you won't have to worry about losing your panties.....sorry that just cracked me right up!

I'm hoping this program will be taken on the road soon!

Karen

[wildflowerAnn]

Hi Dulane,
I just got an unexpected gift in the mail today from Roche. A set of garden gloves and a nice booklet with most of the PATH ideas. Has a rainbow in your shopping cart section with color groups and what they can do; discussions about dietary fat and the benefits of fish oil and flaxseed oil; tips for traveling with meds; exercise tips; pausing for peace and for health; and organ transplant information which doesn't apply to me so I won't read that.

Hi Karen,
My face is still touch-and-go so maybe next year I can get to wear foundation again. Had to go to a meeting today so I at least wore some lipstick to look nicer. I'm not a born beauty. LOL! Makeup helps me. I'm not on any particular diet except avoiding foods that I've become sensitive to after P development. Sugar and deli meats set my skin on fire. It is either an interaction with the meds, or I've simply developed sensitivity to these foods, so I avoid them to prevent inflammation. Milk and dairy don't cause inflammation for me, so I consume these too because I have to get calcium in me every day. I've pretty much followed Jennmkirby and Jor-El's rotational diet of foods without additives since I lost the option of topical steroids and it has gotten me through it. Doesn't mean it will help other forms of psoriasis or psoriatic arthritis. It has helped me though, and if it works, I'll stay with it. :)
Abbot and NPF put together PATH. Hmmm. Did Roche see this and decide they better put something together too? I was glad to get the booklet since I can't travel and can't go to conferences and get these handouts.
Ann

[ouchyk]

Ann,

To be more clear on diet, they did say if you found something that you know bothers your P or PA then by all means avoid it. People can and do have food allergies and sensitivities from what I understand. Alcohol can be one that someone might avoid if it bothers them, and sometimes when you've had a few drinks you might go and injure a joint because you might do something that you don't normally do ie; swandiving :p ...Also, as you've stated one food might bother a person where another one doesn't. Just like yourself you've found that certain items bother you and that's a good thing so now you can aviod it! They did not recommend a food allergy test.

They did however make sure that we knew that there wasn't any diet to stop the possible progression of PA.

This to me is very important as I read much about diets and arthritis. It was also stated in the opening comments from the doctor who spoke about PA specifically, little was talked about on the psoriasis end as PA was the focus. The doctor told us that it can be dangerous to go to the web and find information that might be detrimental to our joint health thus the need for reliable sources such as the information pull down sections of the NPF, NIH, rheumatology.org, arthritis foundation etc.

Thanks on the tip from Roache....Going there now to order up! :D ( happy that you don't need anything transplanted except flowers!! ) You also might be interested in knowing that Enbrel gave out some really cool gifts! A relaxation tape, a candle and a stress ball to squish around, so it seems that many of our mfgs are getting on board with holistic health treating our minds and bodies. Recently, Abbot the makers of Humira sent me a dexterity kit which has come in handy!

Go post your picture I'm willing to bet you don't need any makeup! :p

Karen

[wildflowerAnn]

Gosh, I can't post a picture now. Just go to any photos on the internet of starving people released from a concentration camp, and one of them would look like me. LOL! I don't have a digital camera, and I don't know why because I've purchased them as gifts for lots of my family. I should get someone to photograph the generalized pustular psoriasis flares for illustration. They are not as bad as the photo in the illustration thread now, but when I first flared, my gp looked exactly like those photos, followed by the huge sheets of skin in the e-dermic photos. When I get some weight back and clear up, perhaps I can get a digital photo taken and post it. Until then, no photos please :)

[wildflowerAnn]

I could (but won't) post a photo now! ( I like privacy to the extent I can have it in this electronic era.) Love this PATH holistic approach. How did this important regimine that NPF has now endorsed get lost so far back on the message boards. Anyone else starting on it since the conference?

[ouchyk]

Your right, this post did fall to the bottom!

However it is easily accessed at the front page of www.psoriasis.org!

For those really into it perhaps a direct link would be best from thier sig line might be helpful?

I copied ( okay Serge did, thanks Serge! ) all the literature given to me from PATH to pass along to our group in Boston, and it was a TON of great information! Hopefully any SGL who attended have done the same.

I have copies for anyone who wishes to have them and would be happy to pass them along.

I've been in touch with our local Abbot ( makers of Humira ) representative to see if there will be a session coming to our area in the future. I'll be sure to post it in the " news " section of the boards when it does!

Karen

[wildflowerAnn]

Thank you so much Karen. There are many members who could not attend the National Conference because of job reasons, or financial reasons. How kind of you to offer to mail copies of the handouts to those members who could not attend. Should they just send you a private message to ask for the copies?

[ouchyk]

Absolutely! I'd be happy to send copies to anyone in need, just PM me your address or an address ( perhaps work? ) that you would like me to send them too and I will get them out pronto!

Scholarships are always available for those wishing to go to the conference however I don't know that anyone could help with days off from work if they work weekends...and for those who have speical needs the NPF is wonderful about providing help ie; wheelchairs, diets ( lots of vegaterians ) etc.

Karen

[seedoubleyou]

...and for those who have speical needs the NPF is wonderful about providing help ie; wheelchairs, diets ( lots of vegaterians ) etc.
Just wanted to comment on the above.

I had planned to attend Capital Hill Day back in late February -- had paid my registration, purchased airline tickets, etc. As many know, I'd undergone extensive knee surgery only 3+ weeks prior to the event and was still at non-weight bearing status at that point (meaning, I was in a wheelchair and/or could ambulate only with crutches to facilitate healing of the repairs). Still, I felt so strongly about the event that I wasn't about to let the knee keep me from participating.

The NPF was absolutely fabulous arranging assistance for me (transportation, wheelchair). To say I was impressed is an understatement!! They really did go above & beyond in an attempt to accomodate me. I would encourage anyone who wishes to participate in any of the NPF events to contact them if you need some type of assistance, be it financial or otherwise.

Ultimately I was not able to attend CHD as I developed some complications which impeded the circulation in my leg.

[wildflowerAnn]

I think Karen's offer is extremely generous, but there is a cost in photocopying and mailing plus gas money to get to the post office. My friend's celiac group mails out packages, and only asks for reimbursement of the costs. That's fair.

[SandraJean]

Hi,

I am in a wheelchair and attended the CHD in 2004 and the conference in Boston in 2005. Due to health and family concerns I was unable to attrend in CDH in 2005 or the convention in 2006.

The facilities were absolutely very accessable for anyone with any handicap or disabilty. The staff at NPH went over and above and beyond meeting the needs that I would have to have.

My thanks to all who made my trip so worthwhile and helpful!!

Sandy