Psoriasis researchers had visited Capitol Hill to seek funding.

Scientist Tom McCormick, assistant professor of dermatology at Case Western Reserve University in Cleveland, believes that connecting patient experience with research findings is vital in understanding the impact that psoriasis and psoriatic arthritis have on public health, including factors such as quality of life and work productivity.”Making that bridge is critical,” McCormick said. It drives his dedication to ensure that Congress continues supporting collection of data on psoriasis and psoriatic arthritis.

He spoke with lawmakers in early March as part of a group of scientists and volunteer leaders who traveled to Capitol Hill in Washington, D.C., as well as to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) in Bethesda, Md., to advocate for federal support of psoriasis research.The goal is to stay in front of lawmakers who last year provided $1.5 million to fund the first stage of psoriasis data collection at the Centers for Disease Control (CDC) in Atlanta. By keeping the need for psoriasis research in front of Congress, the hope is that funding will continue and the CDC can advance from the initial phase to the actual data collection.

Also participating in the fly-in were Terri Theisen, representing the National Psoriasis Foundation Board of Trustees, who told Congress about the Foundation’s investment in and commitment to research for a cure, and Lauren Oickle, who is pursuing a career in science in part because of her experience living with psoriatic disease.

Psoriasis researchers joining McCormick included:

Anne Bowcock, Ph.D, professor at Washington University School of Medicine in St. Louis;
Nehal Mehta, M.D., M.S., preventive cardiology, director of inflammatory risk, Division of Cardiovascular Medicine, at University of Pennsylvania School of Medicine in Philadelphia;
Abrar Qureshi, M.D., assistant professor, Harvard Medical School in Boston.

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Our Christmas wish:

 

Bringing new drugs to market is a long and complicated process—yet one that offers hope to millions with psoriasis and psoriatic arthritis.

Read more about it here. Click Here

An official facebook page for the association has been set up. Feel free to join or post.

http://on.fb.me/aMHmJh

Health: Smoking out psoriasis

Hi Everyone,

It’s World Psoriasis Day (WPD) and this year’s theme is “Childhood Psoriasis – A Challenge For All”.

For more information about WPD & information about childhood psoriasis, visit: www.worldpsoriasisday.com

The psoriasis association had the following planned for WPD in 2010. They include:

(a) Psoriasis Association Of Malaysia Representation At The 19th Regional Conference of Dermatology

Eugene had been invited to share his story about a Malaysian living with Psoriasis at the above conference. Held recently (20-23 Oct 2010) – the conference gathered dermatologist from around the region (Asian & Australasian). Once we get a chance to catch up with Eugene (since his flight back) – we will update this website with more details of Eugene’s trip.

(b) New Straits Time Article: Smoking Out Psoriasis



As part of creating awareness for WPD – the team at the association had begun contacting members of the media between the months of Sept-Oct. A great thank you to Annie Freeda Cruez for agreeing to cover this story for the New Straits Times. We are very thankful for your time and invitation to interview Eugene. An excerpt of the article can be found below with the link to NST website.

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2010/10/25

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Some 500,000 Malaysians have psoriasis and the Psoriasis Association of Malaysia is on a mission to track them down, writes ANNIE FREEDA CRUEZAIR Force retiree Major Eugene Clifford Cross’ first encounter with psoriasis was when he had severe dandruff-like flakes in his scalp.
“The dermatologist treated me for dandruff for months. It was when I went to United Kingdom for a course in 1970 that a visit to the dermatologist there revealed I had scalp psoriasis.” It was a shock for Cross when the doctor told him that it’s a disease that he will take to his grave.

Read more: Health: Smoking out psoriasis http://www.nst.com.my/nst/articles/Health_Smokingoutpsoriasis/Article/#ixzz13pUoyXGX

 

(c) Attend The Launch Of “PsorAsia” At The 19th Regional Conference of Dermatology
Many months ago Josef de Guzman (President of The Psoriasis Association of The Philippines) visited us in KL. He presented the idea for an Asian Psoriasis Orgaisation. 

Psoriasis Asia is a non profit organization made up of psoriasis associations from Asia and the Pacific Region.

PsorAsia unites psoriasis associations so that their regional campaign for improved medical care, greater publick understanding and increased research will improve the lives of people who live with psoriasis and psoriatic arthritis and explore the challenges psoriasis presents to the asian psoriasis community

 www.psorasia.org

That’s all the updates for now. Have a good week ahead.

Over the past few weeks and months – we have noticed that there have been a few spammers in the Psoraisis Forum at psoriasismalaysia.editboard.org

This is bothersome and troublesome. The reason is that the spammers have created many posts in each forum thread. From my knowledge of the forum – there is no way an admin person can delete all the post by pressing a single button and the admin has to go to every posts. This is very tedious.

I have already banned such members though their posts will still linger in the forum.

Hence until the forum developers (3rd party) develops a function where we can delete these spam posts – I’m afraid the forum may be more difficult to read.

Anyone who has a possible solution to his problem, feel free to contact me by leaving a message to this post. Thanks.

An article appeared in The Star newspaper today and Eugene has a quote in the article too. Here is the article reproduced. To view the article at The Star Online, click here.

Psoriasis is more serious as it also affects muscle joints, says expert

By AUSTIN CAMOENS
newdesk@thestar.com.my
JOHOR BARU: Psoriasis also affects the joints, and the public misconception that it is just a skin disease needs to be corrected, according to a medical expert.
Sultanah Aminah Hospital (HSA) dermatologist Dr Choon Siew Eng said many Malaysians were still unaware of the severity of the disease.
“Psoriasis is believed to affect between 2% and 3% of the country’s population, but many do not know they have the disease because they believe it is a skin disease or fungal infection,” she said.
She added that since the set-up of a psoriasis registry here in 1992, there were 2,829 patients suffering from the disease. Dr Choon said the first sign that an individual was having psoriasis was a troublesome scalp resembling bad dandruff.
“Although there is no cure for the disease, it can be controlled with proper treatment,” she said in her presentation during a talk at the hospital yesterday.Dr Choon added that conventional treatment for the disease would cost about RM100 a month, but there were designer drugs that could help contain the disease faster costing between RM4,000 and RM5,000 a month.
A psoriasis patient, who only wanted to be known as Morgan, 43, said individuals suffering from the disease must be mentally strong. “I was diagnosed with psoriasis about 22 years ago, and it has been a depressing time for me,” he said, adding that he believed stress played a major role in triggering the disease.
Morgan said the only way to keep the disease at bay was to keep one’s spirits high and to diligently take the medication prescribed.
Another patient, Guna, in his 50s, said he has had the disease for 26 years, and he kept away from society initially because he was embarassed with his condition.
“It was difficult for my family and close friends to accept the disease because they did not understand how it could happen to me,” he said. Psoriasis Association of Malaysia (PAM) president Eugene Clifford Cross said the association was established to update patients on the latest treatment and information about the disease.
“The association is a support group for people afflicted by the disease to get professional advice, as well as to share their experiences with fellow patients,” he said. To learn more about PAM or other information, visit its website at www.psoriasismalaysia.org or call 03-8948 4335.

The committee members were given an idea by the president of the Psoriasis Association Philippines (during his recent visit to KL) to list doctors whom the association members had a positive experience in caring for their psoriasis. The following list are doctors in the Klang Valley who care for psoriasis patients on a regular basis. Should you wish to submit your dermatologist whom you reckon provides excellent care for your psoriasis – please contact us.

Dr Koh Chuan Keng
Koh Skin Specialist Clinic
5M, Jalan SS21/1A
Damansara Utama
47400 Petaling Jaya
Tel: 03-7725-8437
Fax: 03-7725-8439

Dr Chow Kim Weng (Association Medical Advisor)
The Skin Centre
323, (Ground Floor) Jalan Pudu
55100 Kuala Lumpur
Tel: 03-9222-5278
Fax: 03-9222-5273

Dr Gangaram Hemandas (Association Medical Advisor)
Prince Court Medical Centre
39, Jalan Kia Peng
50450 Kuala Lumpur
Tel : 03 – 2610 0000 Ext 2955

Members from the Psoriasis Association met at the Prince Court Medical Centre on a rainy Sunday afternoon. The turnout was smaller this year with approx 15 members attending.

The meeting started with a welcome address by the association’s president Mr Eugene Cross. After the standard AGM procedures such as passing of yesteryear’s minutes, annual report and accounts – Dom presented to the members on the internet activity by Malaysians concerning Psoriasis.

A brief preview of the PsoriasisMalaysia Forum, The Psoriasis Malaysia Blog & Facebook’s psoriasis group were introduced to the members. A short video termed “Under The Spotlight” (featured in an earlier post) filmed for the World Psoriasis Day 2009 was shown to members.

I must say that the Prince Court Medical Centre has excellent facilities and fast internet. We managed to download the video within minutes via a WIFI connection. The auditorium was very impressive including full audio video facilities with a multiple LCD panels, dim lights, superb audio features.

The meeting ended with Dr Ram (the new medical advisor to the association) giving a presentation. Dr Ram gave a presentation entitled “Updates On The Management Of Psoriasis”. Dr Ram gave his thanks to the Prince Court Medical Centre for allowing the association to use the premises at no cost, the association members for attending, the dermatology association of Malaysia and representatives from Leo Pharma.

Dr Ram gave a presentation that covered Psoriasis in general and the latest treatments available globally. It has been medically accepted that Psoriasis is systemic and also increases cardiovascular morbidity. Dr Ram gave a good guideline for the members using the mnemonic (his invention) called “T I M E S” to assist in caring for their psoriasis. Psoriasis members should use TIMES to remember the following and to avoid the following items/situations

T – Trauma (avoid injuries, jelly fish/insect stings, etc)
I – Infection (HIV, virus, etc)
M – Medication (Beta blockers, Lithium, NSaids, etc – can’t be taken by psoriasis patients)
E – Endocrine (pregnancy, hypocalcaemia)
S – Stress, Smoking

The members then adjourned for refreshments and a “get to know each other” session. Members exchanged notes on their treatments and medications.

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UPDATE: The Annual General meeting for the Psoriasis Association Of Malaysia will be held on 11th April 2010.

Time: 4pm
Venue: Main Auditorium, Prince Court Medical Centre, Jln Kia Peng KL
39 Jalan Kia Peng, Kuala Lumpur.

Agenda:

1. President’s address

2. Talk on “Treatment & Management of Psoriasis”

3.  AGM

4. Election Of Office bearers for year 2010 to 2012

5. Questions & Answers Session

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