Question:
Hi,
I wasn't sure where to post this, but thought I'd try the conversations, maybe it should go in the psoriasis or psoriatic arthritis thread.
This was in my local newpaper today---Brighton-Pittsford Post, September 7, 2005
Pittsford women to lead support group
Sandra Hawbecker hopes to raise awareness and help those who have psoriasis and psoriatic arthritis
By Jeremy Moule
Sandra Hawbecker knows the woes of psoriatic arthritis suffers all to well.
The condition, which is related to the skin disease psoriasis, causes pain, stiffness and swelling in joints. Pain can range from mild to severe. There is no cure.
At one point, Hawbecker had it in as many as 98 joints in her body, a number that has dropped considerably since beginning treatment. It's a condition that can be painful and can leave fingers and toes disfigured, she said.
While medical treatment is important to her, she believes more is needed for the peole who have the condition. To that end, she has started the Rochester Area Psoriasis and Psoriatic Arthritis Support Group. It will have it's first meeting 7p.m. Monday Sept 12, at First Baptist Church of Rochester, 175 Allens Creek Road, Brighton.
"A lot of people have said they don't know any other people with psoriasis," Hawbecker said.
The support group has already attracted interest from as far away as Bath and Skaneateles, she said and has been advertised into the Buffalo and Syracuse areas. It is organized through the National Psoriasis Foundation.
The main focus on the group is emotional support, but the group will also serve as a way to disseminate information about the condition to patients and the public. Hawbecker said. It will also help keep patients updated on medical and pharmaceutical advances in treating the condition, she said.
Marilyn Gawlik of Fairport who is assisting Hawbecker, has a family member with psoriasis. She, too, has seen the trials and tribulations of someone afflicted with the condition.
"People with psoriasis often feel alone" said Gawlik.
She believes the support group will help foster friendship among the participants and will also allow them to share ideas about coping with the condition.
The group will meet the second Monday of every month, Hawbecker said.
Dermatologist Dr. Deborah Ann Englert is schedualed to speak at the October meeting. Other medical professionals have expressed interests in speaking at future meetings, Hawbecker said.
Psoriasis causes dry, red, scaly patches on the skin and can cover as much as 95 percent of the body. Psoriatic arthritis and psoriasis are related, with about 10 to 30 percent of people who have psoriasis also having psoriatic arthritis, according to the National Psoriasis Foundation.
The condition can also cause fatigue.
Sufferers often have to cope with people who don't understand the condition or have misconceptions about it. Some peopel have been passed over for a job or promotion because of the condition, Hawbecker said.
Also, some sufferers may not have access to medical treatment.
But Hawbecker hopes the support group participants are able to direct their meetings to suit their needs, whether it is emotional support or a desire to learn more about the condition. There's even opportunities for members to work outside the meetings in an advocacy capacity, Hawbecker said.
"It's their meeting, not mine," Hawbecker said. "I'm just the facilitor"
Sandy! This is fantastic! I hope it brings you many people for your group. I know you're going to be an awesome leader. Congrats on the news coverage!
Jody
Congratulations, Sandy!! Hope you're ready for a huge turnout for your first meeting. I know you're going to be wonderful at it!! :D
WOW! Sandy! the best just keeps getting better for you! all this greatness coming your way, and i know you'll just keep one-upping it and doing better all the time. you are truly an inspiration!
Congratulations, Sandy and Marilyn! I hope that you have a wonderful turn out!
Mike
Go Sandy Go,
With that newspaper article I can see hundreds and hundreds of people lining up to become members of the group.
In reality I hope you have great sucess. Keep up the good work and we will be waiting for an update. I wish I could be there!
Mitch
This is a great thing Sandy!
Awesome Sandy!!! ;)
That's awesome :)
Congrats!
sandy, you're amazing!! Congrats and i hope you get a ton of people at your meetign!
this is a wonderful article! thank you for sharing and I know you will be a fantastic group leader....you are such a joy to talk with and spend time with...congratulations....
aloha,
Abby
:)
Congrats :) That is just wonderful news :) I wish u all the best!
Ashley
Thanks everyone for replying to this thread. I've been gathering information and lining up things I want to take for tomorrow's meeting. I'm also getting a little nervous, but I guess that's normal. I'll let you all know how it goes. Thanks for everything
Sandy
I wasn't sure where to post this, but thought I'd try the conversations, maybe it should go in the psoriasis or psoriatic arthritis thread.
This was in my local newpaper today---Brighton-Pittsford Post, September 7, 2005
Pittsford women to lead support group
Sandra Hawbecker hopes to raise awareness and help those who have psoriasis and psoriatic arthritis
By Jeremy Moule
Sandra Hawbecker knows the woes of psoriatic arthritis suffers all to well.
The condition, which is related to the skin disease psoriasis, causes pain, stiffness and swelling in joints. Pain can range from mild to severe. There is no cure.
At one point, Hawbecker had it in as many as 98 joints in her body, a number that has dropped considerably since beginning treatment. It's a condition that can be painful and can leave fingers and toes disfigured, she said.
While medical treatment is important to her, she believes more is needed for the peole who have the condition. To that end, she has started the Rochester Area Psoriasis and Psoriatic Arthritis Support Group. It will have it's first meeting 7p.m. Monday Sept 12, at First Baptist Church of Rochester, 175 Allens Creek Road, Brighton.
"A lot of people have said they don't know any other people with psoriasis," Hawbecker said.
The support group has already attracted interest from as far away as Bath and Skaneateles, she said and has been advertised into the Buffalo and Syracuse areas. It is organized through the National Psoriasis Foundation.
The main focus on the group is emotional support, but the group will also serve as a way to disseminate information about the condition to patients and the public. Hawbecker said. It will also help keep patients updated on medical and pharmaceutical advances in treating the condition, she said.
Marilyn Gawlik of Fairport who is assisting Hawbecker, has a family member with psoriasis. She, too, has seen the trials and tribulations of someone afflicted with the condition.
"People with psoriasis often feel alone" said Gawlik.
She believes the support group will help foster friendship among the participants and will also allow them to share ideas about coping with the condition.
The group will meet the second Monday of every month, Hawbecker said.
Dermatologist Dr. Deborah Ann Englert is schedualed to speak at the October meeting. Other medical professionals have expressed interests in speaking at future meetings, Hawbecker said.
Psoriasis causes dry, red, scaly patches on the skin and can cover as much as 95 percent of the body. Psoriatic arthritis and psoriasis are related, with about 10 to 30 percent of people who have psoriasis also having psoriatic arthritis, according to the National Psoriasis Foundation.
The condition can also cause fatigue.
Sufferers often have to cope with people who don't understand the condition or have misconceptions about it. Some peopel have been passed over for a job or promotion because of the condition, Hawbecker said.
Also, some sufferers may not have access to medical treatment.
But Hawbecker hopes the support group participants are able to direct their meetings to suit their needs, whether it is emotional support or a desire to learn more about the condition. There's even opportunities for members to work outside the meetings in an advocacy capacity, Hawbecker said.
"It's their meeting, not mine," Hawbecker said. "I'm just the facilitor"
Answers:
Sandy! This is fantastic! I hope it brings you many people for your group. I know you're going to be an awesome leader. Congrats on the news coverage!
Jody
Answers:
Congratulations, Sandy!! Hope you're ready for a huge turnout for your first meeting. I know you're going to be wonderful at it!! :D
Answers:
WOW! Sandy! the best just keeps getting better for you! all this greatness coming your way, and i know you'll just keep one-upping it and doing better all the time. you are truly an inspiration!
Answers:
Congratulations, Sandy and Marilyn! I hope that you have a wonderful turn out!
Mike
Answers:
Go Sandy Go,
With that newspaper article I can see hundreds and hundreds of people lining up to become members of the group.
In reality I hope you have great sucess. Keep up the good work and we will be waiting for an update. I wish I could be there!
Mitch
Answers:
This is a great thing Sandy!
Answers:
Awesome Sandy!!! ;)
Answers:
That's awesome :)
Congrats!
Answers:
sandy, you're amazing!! Congrats and i hope you get a ton of people at your meetign!
Answers:
this is a wonderful article! thank you for sharing and I know you will be a fantastic group leader....you are such a joy to talk with and spend time with...congratulations....
aloha,
Abby
:)
Answers:
Congrats :) That is just wonderful news :) I wish u all the best!
Ashley
Answers:
Thanks everyone for replying to this thread. I've been gathering information and lining up things I want to take for tomorrow's meeting. I'm also getting a little nervous, but I guess that's normal. I'll let you all know how it goes. Thanks for everything
Sandy
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