Question:
Hi there!
I just thought I would share some photos that Olga Tuttle--NPF's Medical Outreach Manager--took at the National Psoriasis Foundation's reception at the American Academy of Dermatology's National Conference the evening of 3/6/06 in San Francisco. The Foundation staff were there recognizing dermatologists from all over for their contributions to the National Psoriasis Foundation as well as for high volumes of patient referrals.
Our support group was recognized and Jody had an opportunity to make a short speech on the importance of referring patients to the Psoriasis Foundation.
Our group and its participants are having an amazing time getting involved with local and national activitiy!
Me at the check-in table:
The One-And-Only (?) Fred Finkelstein!
Foundation Director of Research, Liz Horn and Fred:
Jody put together a very heartfelt speech about the importance of referring patients to the National Psoriasis Foundation:
Jody and me (her security blanket :D ):
Eh, she's a pro!
Jody and her esteemed dermatologist, Dr. Elizabeth Abel:
Diana, thanks for posting those pics! That was quite an experience, speaking to the dermatologists. Thank goodness Diana was by my side -- my hands were shaking! In case anyone's interested in what I said, here's the text (warning -- it's long!)
"My psoriasis started eight years ago. I had only been married six months when I noticed a small scaly patch on my scalp. Within six months after that, my body was covered head to toe with itchy, cracking, bleeding lesions. I was embarrassed at how I looked, depressed, confused. I couldn't stand the stares of disgust from strangers. I stopped leaving my house. My husband wanted me to join him on company outings, but I was afraid I'd be a liability to his career, so I made excuses not to go. I stopped working outside the home, certain no employer would hire me.
I was lonely and frightened. I'd wait until my husband went to bed at night so I could cry in private without upsetting him.
I got on the Internet and searched around for a possible explanation and maybe a cure. I read about psoriasis, but I was determined that it couldn't possibly be that. I wanted it to be anything but psoriasis.
A few years ago, while seeing an allergist for my hay fever, he noticed the lesions on my hands and said, "oh I see you have psoriasis." I said, no, it's eczema. He said, "it really looks like psoriasis, and I think you need to see a dermatologist." No longer able live in denial, and desperate for some relief, I finally made an appointment with the dermatologist the allergist recommended.
He took one look at me and said it was definitely psoriasis. He wrote me a prescription for a small tube of clobetasol, enough to cover maybe my left thigh, and sent me on my way. I asked him, "do you want to see me again?" He said no.
I went home and cried for two days straight. My worst fears confirmed, and having had a rather unsatisfactory visit with that first dermatologist, I sunk into despair.
Then I got back on the Internet and read everything I could find about this disease and what treatment options might be available to me. I read a post on a newsgroup about the National Psoriasis Foundation and the good work they've been doing for awareness and advocacy.
The day I discovered the Psoriasis Foundation is the day my life turned around. I found a community of people who shared their experiences and support with each other. I found pages and pages of information about the disease, the research being done, and new advances in treatment options.
On the Foundation website I found the physician directory listing dermatologists in my area. I knew if they were in this directory that they were at least interested in treating psoriasis and keeping current on latest research. That's how I found Elizabeth Abel, a wonderful dermatologist who specializes in treating psoriasis. At my first appointment with her I found out she had served on the Psoriasis Foundation Medical Board. I knew I had come to the right place.
At my first appointment with Dr. Abel, I told her about the research I had done on currently available treatments. I had researched potential side effects of each drug and had weighed the risk versus benefit of each drug. Dr. Abel was sympathetic and caring about how severely psoriasis and psoriatic arthritis affected my life. She was also impressed with the amount of knowledge I already had about the disease and what treatments were available. I understood how important my compliance is on how effective any treatment would be. We discussed the pros and cons of each treatment and together we decided what our next steps would be.
I continue to see Dr. Abel as a partner in treating my disease. I know that by working with her and my rheumatologist, we will eventually get my psoriatic arthritis under control too.
As I mentioned, the day I found the National Psoriasis Foundation is the day my life turned around. Besides the wealth of information they provide, they also provided me with a community. I no longer felt alone and that I finally had control over this disease, instead of it controlling me. Through the Foundation I found Diana and Brendalynn, and together the three of us started a local support group under the umbrella of the Foundation. This has been the most emotionally satisfying and empowering thing I've ever done. We work to provide emotional support to others in our area, empower them with knowledge and provide opportunity for advocacy, both locally and on Capitol Hill.
Doctors who refer their patients to the National Psoriasis Foundation bring power and knowledge to their patients. An informed patient is more likely to comply with their treatment and have reasonable expectations. A patient with emotional support will no longer despair of having to suffer alone. An informed patient is a more satisfied patient.
The top three doctors who have referred their patients to the National Psoriasis Foundation are Jerry Bagel MD, Robert Kalb MD and Mark Lebwohl MD.
Make sure to get an abundance of materials for your patients by contacting Olga Tuttle, the Foundation's Medical Outreach Manager. Thank you. "
DianA,
Thanks for the pictures.....I love the one of Fred reading about Fred....classic.
You guys really have something going on the west coast!
Jody,
It was a pleasure to meet you in D.C.
Thank-you for posting your speech, not only did it make me cry, it made me remember what the NPF and the NPF message boards have done for me. I hope if you don't mind my printing that speech for future reference.
Alli, I'm honored and flattered you want to print it...please feel free. Meeting you in DC was a definite high point of my trip. :)
Jody
Diana- THANKS!! I love those pics..hope u did a good job as the security blanket ;) gotta keep her safe!!
Jody- omg..i loved your speech!! i too want to print it out. i found it a great use of information and it too brought me to remeber what exactly this foundation is to me..a family..a family that helps me be informed. :) thanks for going up there and talking...it means the world to me..:)
x0x
Dee
Hi Jody,
Please accept my sincere appreciation of you and everything you do for your group and the Foundation, and as an affiliated leader for the rest of us. Your Co-Leaders are wonderful young women, empowered and incredible advocates in their own rights, and you each have my sincere respect.
I know it was an incredible act of courage for you to give that speech, and I thank you. I know because I have been in a similar place, and I know how hard it is. I must confess that reading your speech did not make me cry, but I have heard so many stories, and know yours well too. That does not in any way mean that it was not powerful and very important. What reading your speech did for me was to remind me of how important it is for members to share and become involved, how one story can make a huge difference.
Our stories are all very similar. Yet, each is unique and important. The story that is never told is the one that has no impact. Jody, my friend, you stood up , faced some serious fears, and lead our Community. You are a real heroine for our cause.
Let's not forget that the Foundation was founded by a woman, Beverly Foster. I am thinking that we women Leaders in the country should be feeling empowered by that knowledge.
Regards,
Diana,
Thanks for posting the wonderful pictures. It has been such a pleasure to have met you and am grateful for all you've done.
Jody,
What a beautiful speech. Thank you for sharing it with us. I am honored to have met you and you have been such a strength to all of us.
You guys out on the west coast have something great going on. Contnue to inspire us
Sandy
Great Pics and I'm also proud to have met ya'll in DC!
I also agree that was a priceless shot of Fred.
Great pics. I've heard your story before; it's always very moving. Nice job!
Mike
Jody,
Your speech was heart warming and an inspiration. It serves to remind all of us how fortunate we are to have the NPF and all the great members of this community to help.
Thank you for posting it.
Robert
Jody, I am so proud of you. You have done so much to inform and educate sufferers both here and in your community. You are such a wonderful person.
Marie
Jody,
I don't know how I missed this thread until tonight, but I have to tell you that I was very moved reading the text of your speech. For all the times chatting, meeting you in Boston, seeing you again at CHD, I realized that I'd never really heard your story.
Congratulations, dear friend. What a wonderful thing you did with that great speech, and I know it's just a continuation of the great support work you do with your group and with all of us on the boards. Thank you.
And Diana, although security blanket was a very cool role, you are so much more. Thank you for bringing this thread to my attention, and for the great pictures...
Doug
Jody, Diana, and Brendalynn,
You and your group serve as such wonderful role models for all support groups, and I continue to be amazed and humbled at all you have managed to accomplish, especially in such a short period of time that your group has been active. I credit all of you for giving me the push I needed to become a support group leader. I doubt I'll ever accomplish as much as you all have, but it's something to strive for. Thanks for all that you have done and continue to do in bringing attention to our cause. Not many know the difficulties that each of you have overcome or continue to struggle with in the interest of improving access to care and advancing towards a cure for all of us. Thank you from the bottom of my heart.
Jody, Diana, and Brendalynn,
You and your group serve as such wonderful role models for all support groups, and I continue to be amazed and humbled at all you have managed to accomplish, especially in such a short period of time that your group has been active. I credit all of you for giving me the push I needed to become a support group leader. I doubt I'll ever accomplish as much as you all have, but it's something to strive for. Thanks for all that you have done and continue to do in bringing attention to our cause. Not many know the difficulties that each of you have overcome or continue to struggle with in the interest of improving access to care and advancing towards a cure for all of us. Thank you from the bottom of my heart. Thanks Kim!
It's hearing things like this that gives me even more motivation to do what I do with our group and continue to branch out to do whatever is in my power for our collective cause!
And Diana, although security blanket was a very cool role, you are so much more. Thanks Doug! It means a lot to me to hear this too! :D
I just thought I would share some photos that Olga Tuttle--NPF's Medical Outreach Manager--took at the National Psoriasis Foundation's reception at the American Academy of Dermatology's National Conference the evening of 3/6/06 in San Francisco. The Foundation staff were there recognizing dermatologists from all over for their contributions to the National Psoriasis Foundation as well as for high volumes of patient referrals.
Our support group was recognized and Jody had an opportunity to make a short speech on the importance of referring patients to the Psoriasis Foundation.
Our group and its participants are having an amazing time getting involved with local and national activitiy!
Me at the check-in table:
The One-And-Only (?) Fred Finkelstein!
Foundation Director of Research, Liz Horn and Fred:
Answers:
Jody put together a very heartfelt speech about the importance of referring patients to the National Psoriasis Foundation:
Jody and me (her security blanket :D ):
Eh, she's a pro!
Jody and her esteemed dermatologist, Dr. Elizabeth Abel:
Answers:
Diana, thanks for posting those pics! That was quite an experience, speaking to the dermatologists. Thank goodness Diana was by my side -- my hands were shaking! In case anyone's interested in what I said, here's the text (warning -- it's long!)
"My psoriasis started eight years ago. I had only been married six months when I noticed a small scaly patch on my scalp. Within six months after that, my body was covered head to toe with itchy, cracking, bleeding lesions. I was embarrassed at how I looked, depressed, confused. I couldn't stand the stares of disgust from strangers. I stopped leaving my house. My husband wanted me to join him on company outings, but I was afraid I'd be a liability to his career, so I made excuses not to go. I stopped working outside the home, certain no employer would hire me.
I was lonely and frightened. I'd wait until my husband went to bed at night so I could cry in private without upsetting him.
I got on the Internet and searched around for a possible explanation and maybe a cure. I read about psoriasis, but I was determined that it couldn't possibly be that. I wanted it to be anything but psoriasis.
A few years ago, while seeing an allergist for my hay fever, he noticed the lesions on my hands and said, "oh I see you have psoriasis." I said, no, it's eczema. He said, "it really looks like psoriasis, and I think you need to see a dermatologist." No longer able live in denial, and desperate for some relief, I finally made an appointment with the dermatologist the allergist recommended.
He took one look at me and said it was definitely psoriasis. He wrote me a prescription for a small tube of clobetasol, enough to cover maybe my left thigh, and sent me on my way. I asked him, "do you want to see me again?" He said no.
I went home and cried for two days straight. My worst fears confirmed, and having had a rather unsatisfactory visit with that first dermatologist, I sunk into despair.
Then I got back on the Internet and read everything I could find about this disease and what treatment options might be available to me. I read a post on a newsgroup about the National Psoriasis Foundation and the good work they've been doing for awareness and advocacy.
The day I discovered the Psoriasis Foundation is the day my life turned around. I found a community of people who shared their experiences and support with each other. I found pages and pages of information about the disease, the research being done, and new advances in treatment options.
On the Foundation website I found the physician directory listing dermatologists in my area. I knew if they were in this directory that they were at least interested in treating psoriasis and keeping current on latest research. That's how I found Elizabeth Abel, a wonderful dermatologist who specializes in treating psoriasis. At my first appointment with her I found out she had served on the Psoriasis Foundation Medical Board. I knew I had come to the right place.
At my first appointment with Dr. Abel, I told her about the research I had done on currently available treatments. I had researched potential side effects of each drug and had weighed the risk versus benefit of each drug. Dr. Abel was sympathetic and caring about how severely psoriasis and psoriatic arthritis affected my life. She was also impressed with the amount of knowledge I already had about the disease and what treatments were available. I understood how important my compliance is on how effective any treatment would be. We discussed the pros and cons of each treatment and together we decided what our next steps would be.
I continue to see Dr. Abel as a partner in treating my disease. I know that by working with her and my rheumatologist, we will eventually get my psoriatic arthritis under control too.
As I mentioned, the day I found the National Psoriasis Foundation is the day my life turned around. Besides the wealth of information they provide, they also provided me with a community. I no longer felt alone and that I finally had control over this disease, instead of it controlling me. Through the Foundation I found Diana and Brendalynn, and together the three of us started a local support group under the umbrella of the Foundation. This has been the most emotionally satisfying and empowering thing I've ever done. We work to provide emotional support to others in our area, empower them with knowledge and provide opportunity for advocacy, both locally and on Capitol Hill.
Doctors who refer their patients to the National Psoriasis Foundation bring power and knowledge to their patients. An informed patient is more likely to comply with their treatment and have reasonable expectations. A patient with emotional support will no longer despair of having to suffer alone. An informed patient is a more satisfied patient.
The top three doctors who have referred their patients to the National Psoriasis Foundation are Jerry Bagel MD, Robert Kalb MD and Mark Lebwohl MD.
Make sure to get an abundance of materials for your patients by contacting Olga Tuttle, the Foundation's Medical Outreach Manager. Thank you. "
Answers:
DianA,
Thanks for the pictures.....I love the one of Fred reading about Fred....classic.
You guys really have something going on the west coast!
Jody,
It was a pleasure to meet you in D.C.
Thank-you for posting your speech, not only did it make me cry, it made me remember what the NPF and the NPF message boards have done for me. I hope if you don't mind my printing that speech for future reference.
Answers:
Alli, I'm honored and flattered you want to print it...please feel free. Meeting you in DC was a definite high point of my trip. :)
Jody
Answers:
Diana- THANKS!! I love those pics..hope u did a good job as the security blanket ;) gotta keep her safe!!
Jody- omg..i loved your speech!! i too want to print it out. i found it a great use of information and it too brought me to remeber what exactly this foundation is to me..a family..a family that helps me be informed. :) thanks for going up there and talking...it means the world to me..:)
x0x
Dee
Answers:
Hi Jody,
Please accept my sincere appreciation of you and everything you do for your group and the Foundation, and as an affiliated leader for the rest of us. Your Co-Leaders are wonderful young women, empowered and incredible advocates in their own rights, and you each have my sincere respect.
I know it was an incredible act of courage for you to give that speech, and I thank you. I know because I have been in a similar place, and I know how hard it is. I must confess that reading your speech did not make me cry, but I have heard so many stories, and know yours well too. That does not in any way mean that it was not powerful and very important. What reading your speech did for me was to remind me of how important it is for members to share and become involved, how one story can make a huge difference.
Our stories are all very similar. Yet, each is unique and important. The story that is never told is the one that has no impact. Jody, my friend, you stood up , faced some serious fears, and lead our Community. You are a real heroine for our cause.
Let's not forget that the Foundation was founded by a woman, Beverly Foster. I am thinking that we women Leaders in the country should be feeling empowered by that knowledge.
Regards,
Answers:
Diana,
Thanks for posting the wonderful pictures. It has been such a pleasure to have met you and am grateful for all you've done.
Jody,
What a beautiful speech. Thank you for sharing it with us. I am honored to have met you and you have been such a strength to all of us.
You guys out on the west coast have something great going on. Contnue to inspire us
Sandy
Answers:
Great Pics and I'm also proud to have met ya'll in DC!
I also agree that was a priceless shot of Fred.
Answers:
Great pics. I've heard your story before; it's always very moving. Nice job!
Mike
Answers:
Jody,
Your speech was heart warming and an inspiration. It serves to remind all of us how fortunate we are to have the NPF and all the great members of this community to help.
Thank you for posting it.
Robert
Answers:
Jody, I am so proud of you. You have done so much to inform and educate sufferers both here and in your community. You are such a wonderful person.
Marie
Answers:
Jody,
I don't know how I missed this thread until tonight, but I have to tell you that I was very moved reading the text of your speech. For all the times chatting, meeting you in Boston, seeing you again at CHD, I realized that I'd never really heard your story.
Congratulations, dear friend. What a wonderful thing you did with that great speech, and I know it's just a continuation of the great support work you do with your group and with all of us on the boards. Thank you.
And Diana, although security blanket was a very cool role, you are so much more. Thank you for bringing this thread to my attention, and for the great pictures...
Doug
Answers:
Jody, Diana, and Brendalynn,
You and your group serve as such wonderful role models for all support groups, and I continue to be amazed and humbled at all you have managed to accomplish, especially in such a short period of time that your group has been active. I credit all of you for giving me the push I needed to become a support group leader. I doubt I'll ever accomplish as much as you all have, but it's something to strive for. Thanks for all that you have done and continue to do in bringing attention to our cause. Not many know the difficulties that each of you have overcome or continue to struggle with in the interest of improving access to care and advancing towards a cure for all of us. Thank you from the bottom of my heart.
Answers:
Jody, Diana, and Brendalynn,
You and your group serve as such wonderful role models for all support groups, and I continue to be amazed and humbled at all you have managed to accomplish, especially in such a short period of time that your group has been active. I credit all of you for giving me the push I needed to become a support group leader. I doubt I'll ever accomplish as much as you all have, but it's something to strive for. Thanks for all that you have done and continue to do in bringing attention to our cause. Not many know the difficulties that each of you have overcome or continue to struggle with in the interest of improving access to care and advancing towards a cure for all of us. Thank you from the bottom of my heart. Thanks Kim!
It's hearing things like this that gives me even more motivation to do what I do with our group and continue to branch out to do whatever is in my power for our collective cause!
And Diana, although security blanket was a very cool role, you are so much more. Thanks Doug! It means a lot to me to hear this too! :D
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