Tag Archives: support groups

Psoriasis is More Than Skin Deep – Clive Liu, M.D. Speaks – RSVP

Good support groups are invaluable to us – we meet and share information from people just like us – brothers and sisters under the skin – or sometimes, on the skin.  Our ethnic background and appearance doesn’t pay a part in the disease we share – psoriasis, in this case.

My psoriasis has been ‘resting’ for a couple years, but it’s beginning to stretch and yawn itself awake again…ask my elbows.

I still wear the slippers I had to cut away to make room for the swollen crusty weepy sores of psoriasis on my upper feet and the sides of my toes.  Psoriasis can be nasty and mostly attacks kids.

A professor at the University of Washington Medical Center diagnosed my Psoriasis – called it a ‘classic case’.  He stands out as the only M.D. – ever – to recommend an online support group to me and the online support group is how I learned kids gets this…often disfiguring disease.    www.psoriasis.org

If anyone needs a ride, let me know…you won’t be sorry you made the effort to go.


Psoriasis:  More Than Skin Deep

Seattle (Bellevue), Washington

Saturday, March 19, 2011

Courtyard Seattle Bellevue/Downtown

11010 NE 8th Street

Bellevue, WA 98004

Speaker: Clive Liu, M.D.

RSVP for this event >>>

Psoriasis: More Than Skin Deep


9-9:30 a.m.

Registration and complimentary breakfast

9:30-12:00 noon

Psoriasis: More Than Skin Deep.

Hear from Dr. Liu about current treatment options, get research updates and learn how you can be part of the growing movement to find a cure.

Centocor Orth Biotech, Amgen Pfizer, Abbott, Galderma, Beiersdorf, Neutrogena

The National Psoriasis Foundation gratefully acknowledges Centocor Ortho Biotech, Amgen Pfizer, Abbott, Galderma, Beiersdorf and Neutrogena for their support. The Psoriasis Foundation is solely responsible for all content and development.

call 800.723.9166               events@psoriasis.org    www.psoriasis.org

National Psoriasis Foundation

6600 SW 92nd Ave, Suite 300  |  Portland, OR 97223-7195


More later…. Sharon O’Hara

Sarcoidosis People Fight to Overcome

Norway knows as much about Sarcoidosis as the rest of the world:
Sarkoidose, et mysterium!
(Sarcoidosis, a mystery!)

I continued my Google search for up-to-date Sarcoid support group websites.

What is it about Kentucky?
In addition to the Kentucky Derby in Lexington, its world-class horses and breeding farms and its world class Kentucky Horse Park…Kentucky has a finite ‘something’ that draws me back to visit from time to time.
My sister might have something to do with it – she has lived in Kentucky over a half-century.

I was checking out viable websites for Sarcoid support groups to give you and ‘something’ prompted me to stop at the Kentucky listing and call the listed number. An excellent example of patient helping patient for support answered the phone.

Strength for Sarcoid Sufferers (SSS)
Mailing Address: 106 Cedar Stream Drive
Paris, KY 40361
Contact: Peggy Baldridge
(859) 340-4210

Peggy Baldridge is a family minister and commutes to Lexington, KY from her home in Paris, KY. She has 3 daughters, 13, 15 and 17 – too young in 1999 to understand the medical changes and challenges their mom fought. An early on six-month Prednisone treatment course dealt its own whammy…and she had side effects from steroid use.

Trouble is steroid treatment is still the only form of treatment for Sarcoidosis, independently co-discovered in the early 1900’s by a doctor in Oslo, Norway and a doctor in England.

The cause is yet unknown but most people who get Sarcoid never know they have it. It comes and goes.

It left the fibrosis and granulomas in my lungs but Peggy lives with and fights against the ongoing active Sarcoid invasion moving its destruction inside her body.

Peggy’s Sarcoid has shifted over the years, currently in the form of nodules in her skull, behind her forehead – contributing to a twelve-year headache. The elusive disease has now apparently invaded the lachrymal gland behind her eyes and may have advanced to include Sarcoid Arthritis.

Peggy is among the lucky ones – she found a good Sarcoid doctor at the University of Cincinnati and no doubt she adds greatly to current medical knowledge.

Peggy is currently the only member of her support group, perhaps because Sarcoid is elusive and easily overlooked by physicians.
I hope Peggy will chime in here, correct any misstatements on my part, and tell the rest of her story that might help other folks recognize symptoms in themselves and her strength comes from a close relationship with God.
Peggy, will you add to this?

Sarcoidoidosis Networking Association (SNA)
5302 S Sheridan Ave.
Tacoma, WA 98408-3535
Contact: Lynn Short
(253) 826-7737 PST
lynn@sarcoidosisnetwork.org or

Blessings, Sharon O’Hara

The Ugly Psoriasis Picture

Psoriasis is many things – what it is not is just a skin disease. Some is painful – some is disfiguring – worst of all – it primarily hits our kids.

It is not enough for the kids to work their way thru puberty – many live with, most try to hide, the attention getting scales and crust of psoriasis.

Psoriasis is one of the early diseases I acquired after the initial COPD diagnosis when I was about 56. I was beyond the usual psoriasis age but COPD seems to be a trigger leading to Other Stuff. Psoriasis is one of mine.

I had it on my hands, elbows and the top of both feet. I cut off the top off my slippers so nothing touched the crusty, splitting, sometimes bleeding, scales. I had it a couple of years before the worst of it disappeared.

Dr. Barnes, University of Washington, Dermatology Department, diagnosed my psoriasis and he has the distinction of being the first and only medical doctor to recommend an on-line support group.

He called my psoriasis “a textbook case” and prescribed Clobetasol Propionate Ointment…probably outdated now.
He was the most outspoken, frank and informative doctor I had known up to that point. I felt like a student, exactly how we should be treated -he was an educator.

The online support group taught me about the kids out there with this ugly disease and how it affected them – many tragically, but right there, right then, they connected, shared experiences and their lives with each other.

• Psoriasis often appears between the ages of 15 and 25, but can develop at any age.
• Psoriatic arthritis usually develops between the ages of 30 and 50, but can develop at any age.

We have a girl right here in Kitsap County who is one of the exceptions. She does not cover up and hide. Psoriasis covers her…but it doesn’t run her life. She lives life to the fullest, plays sports in school and wears a ‘Here I Am’ folk’s hat. She is active in school and out of school.

Psoriasis does not have a physical support group anywhere in Washington – too bad. The shy kids with psoriasis should meet this student. A girl, a peer, with an attitude.
We need a combined support group filled with inspirational people to learn from – this girl for one.

Another, a woman I met from Mason County who has had five different arthritis operations – more importantly, has a terrific, upbeat attitude about them and many practical experiences to share including ideas she tried that didn’t work… If anyone is interested in being part of such a support group, let’s talk.

“Psoriasis appears to be associated with higher levels of a hormone that may contribute to obesity and metabolic abnormalities, according to findings by researchers in Taiwan (Chen YJ et al. Arch Dermatol. 2008;144[12]:1571-1575). “
Found in January 2009 Jama

“The Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act (H.R. 930/S. 571) … need additional co-sponsors – Contact the Psoriasis Foundation … action@psoriasis.org or 800.723.9166,
ext. 407.

I wonder how many of us in Kitsap County have psoriasis?

Outrageous Lack of Support /Update

I have another blog on arthritis I’m working on, but I had what I thought was an easy answer to a email query to find a support group. Following is my email to her and thought you might be interested.

This is – in part – a post I sent to a person asking me for a respiatory support group in Puyallup and up to 25 miles out of Puyallup.

I’ve spent over 3 hours calling to discover nothing seems to exist. The urls I found were not viable.

The American Lung Association says COPD is now the 3rd leading cause of death in the US but the url to the support group in Puyallup didn’t have a support group. I’m a fan of the American Lung Association but they need to check the urls listed as support groups and keep up-to-date for patients or caregivers looking for help.

WHY don’t patients and their caregivers have access to respiratory/ pulmonary support groups?! All it takes is one room – no cost involved..the group could meet in a park or bus station….anywhere!
“The good news first:

I called a cousin in Puyallup (he was born and raised there) about support groups because his wife died of pulmonary fibrosis and I thought he might know of one or more support groups for you.

However, by the time she was finally diagnosed by a pulmonary physician in Puyallup and sent to the U, she was too far along for support groups – had any existed.
My cousin gave me permission to give you or anyone his phone number– he was her caregiver and will answer questions and pass on what he learned as a caregiver.

One thing he learned is how lucky pulmonary patients are to have the University of Washington Medical Center and Dr. Raghu. He and the U’s outstanding medical staff gave his wife stellar care before and after the double lung transplant at the University of Washington. They tried hard to save her.

I gave him your first name and that you might be in touch – let me know if you want his number.

The ‘bad’ news is that I was shocked to discover this morning that I cannot find pulmonary support groups that exist in Puyallup and a 25 miles radius. I have called pulmonary doctor clinics from Tacoma to Olympia, pulmonary rehabs and hospitals. I have found helpful, friendly people but… no respiratory support groups.

I called the Puyallup hospital URL listed by the American Lung Association of Washington as a support group and learned the RRT liaison does not even work there anymore, and no support group exits there either.

I do have online support groups for you including the following:

1. EFFORTS, a support and advocacy group I found online years ago and saved my life with information on what I, as a pulmonary patient, could do to help myself. They are a invaluable source of online information:

2. EFFORTS newsletters are the best source of pulmonary information and education I have found anywhere. http://www.emphysema.net/Newsletters.html

3. Sherry Milligan, Associate Executive Director of the American Association for Respiratory Care was very helpful: http://www.yourlunghealth.org

A ALAW Better Breathers support group is restarting the 20th in Silverdale – if you are interested.

I am sorry but when we consider that COPD (Chronic Obstructive Pulmonary Disease) is the 4th leading cause of death in the US, I am outraged patients and their caregivers have few to no support groups other than online.

Please stay in touch.

Deaths, percent of total deaths, and death rates for the 15 leading causes of death: United States and each State, 1999

A reader wondered why I claimed COPD was the 3rd leading cause of death in the U.S., then I stated it was the 4th leading cause a few paragraphs later.

I quoted the American Lung Association (ALA) and the Center for Disease Control.

The Center for Disease Control (CDC) person I spoke with wondered what criteria ALA used for the #3 rating

When I get clarification from the American Lung Association (ALA) #3 –I’ll pass it on.


Table LCWK9. Deaths, percent of total deaths, and death rates for the 15 leading causes of death…

United States …

All causes




Diseases of heart (I00-I09,I11,I13,I20-I51)




Malignant neoplasms (C00-C97)




Cerebrovascular diseases (I60-I69)




Chronic lower respiratory diseases (J40-J47)





The COPD rate of the 3rd or 4th leading cause of death in the U.S. is significant in light of lack of COPD research and patient education.

… Thanks for commenting…