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The Psoriasis Association will be having it’s 2011 AGM on
May 29.Jun 05, 2011. The venue and agenda is to be confirmed.
What happens at the AGM? Well, the Psoriasis Association of Malaysia is a registered volunteer based organisation. Under the guidelines of forming an official association – you are required to organise this once a year. Besides voting for new committee members and other official tasks – members can get to ‘network’ in person, catch up with each other and make new friends.
More info will be shared soon. Watch this space!
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.
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
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 http://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
47400 Petaling Jaya
Dr Chow Kim Weng (Association Medical Advisor)
The Skin Centre
323, (Ground Floor) Jalan Pudu
55100 Kuala Lumpur
Dr Gangaram Hemandas (Association Medical Advisor)
Prince Court Medical Centre
39, Jalan Kia Peng
50450 Kuala Lumpur
Tel : 03 – 2610 0000 Ext 2955