The Spastic Children’s Association of Selangor and Federal Territory (SCAS & FT), Malaysia, was established in February, 1960 in a garage of the Red Cross to address the shortfall in the education system that does not cater to children suffering from cerebral palsy (CP). In 1962, the SCAS & FT formally established itself and built a center when it obtained a piece of land and a grant from the former Mayor of Selangor.

Enrollment of children with CP has since increased from seven to approximately three hundred students to date and they are provided free transport, education and various training and rehabilitation treatment such as physiotherapy, speech therapy, occupational therapy and hydrotherapy. Apart from providing the main education and rehabilitation treatments, the SCAS & FT also carries out interesting and beneficial extracurricular activities such as sports, music sessions, gardening, needlework and swimming.

The SCAS & FT accepts children in their centre from as young as one year old to nurture and mould them into self-reliant individuals. Generally, those with less severe CP will start daycare therapy as an outpatient treatment and, if progress is made, they can then enroll in the early intervention program. Older children will be enrolled in the School Section and adult students are employed in the Sheltered Workshops.

Being a self-reliant organization that strives to help every parent who has difficulties providing care to CP children, the SCAS & FT’s efforts have been funded by a handful of private companies and individuals, many of whom have benefited from the SCAS & FT’s charitable services.

My involvement with SCAS & FT started six years ago when my nephew was diagnosed with severe CP as a result of birth negligence. Though he will never progress from the outpatient daycare therapy session, the SCAS & FT have never once denied him treatment and administers the same therapies and dedication levels as that of CP children with hope of rehabilitation. More importantly, it is a place that has provided my family with emotional support by fostering a caring and open environment amongst all students, families and volunteers.

I have just returned from a Photography Show + Tell Session by Palani Mohan, organised by friends of mine who owns the Republik Studio here in Wangsa Maju, Kuala Lumpur.  Palani had photographed a similar looking person; espousing the same drabs – personality, aura and appearance. Sure, that drew my attention and brought a smile to my face, but that was not the pivotal point that attracted me. It connected the dots for me; first it was the elephant’s eye in Vanishing Giants that brought back recollection of the cow’s eye in The Motorcycle Diaries. Then this man…

cataract

Over 1.5% of India is blind. Of these 15 million, almost 10 million are blind due to cataract, and about 1 million are blind (vision less than 3/60) simply because they do not have access to spectacles. Another 1.5 million are affected by infection of the eye. 80% of these people live in rural India, with no access to eye care.

Despite the increase in service availability and heightened outreach screening efforts by groups such as LV Pasad Eye Institute that has put together a working pyramidal model of eye care delivery that has to date reached out to about 30 million rural and peri-urban Indians, blindness has not decreased and uptake of offered cataract surgery services is suboptimal.

Barriers to access cataract surgery services in India have been researched in several studies, citing financial reasons, distance, fear, lack of service awareness, lack of support, or other obligations. These barriers are not surprisingly more prevalent in the rural areas exacerbating social issues that includes loss of productivity, breakdown of interpersonal relationships, depressive manifestations and loss of self esteem, which leads to patients leading an isolated humiliating life.

Patients continuing to remain blind for years even after being diagnosed as operable is unfortunate because cataract surgery is one of the most cost effective health interventions known and most operated eye ailment.  Irrespective of the surgical technique, satisfaction gained from the visual rehabilitation after surgery is incomparable.

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© Penelope Gan – All Rights Reserved – My Mother

I write this not because I want to, but because I have to. It’s good to know before it is too late.

Cancer Is A Bitch!

Skin cancer – whilst is the most common form of cancer with more than one million skin cancers being diagnosed annually, it is generally one of the better cancers to get (if one actually has a choice in this matter). And I am saying this not because I am a cynic by nature, but because 3 out of 4 people will suffer from cancer. 4 out of 5 people will die of cancer.

However, only 3% of skin cancer cases are melanoma, which causes more than 75% of skin cancer deaths. This means that only 2% of people diagnosed with skin cancer dies of melanoma. Yes, melanoma kills. Basal cell carcinoma and squamous cell carcinoma is rarely fatal but can be highly disfiguring.

Melanomas in Asians have a greater tendency than Caucasians to present with advanced disease at time of diagnosis. This is primarily due to the fact that they tend to occur on non-exposed skin with less pigment, with up to 60-75% of tumors arising on the palms, soles, mucous membranes and nail regions, that goes undetectable for a long time unlike other skin cancers that is visible to the naked eye – didn’t I say Cancer Is A Bitch!

Melanoma that occurs on the nail bed is called subungual melanoma. The only good thing about subungual melanoma is, it is a relatively rare cancer with reported incidence between 0.7 to 3.5% of all melanoma cases.

When mom first took serious noticed of her discoloured toe nail with a peculiar dark brown colour stripe that runs along the length of her nail plate, she had by that time lived with it for more than 3 months, dismissing it as a blood clout resulting from a knock, which she admits to not remembering.

Had it not been for her concern as a primary day care giver to my severely brain injured nephew, paranoia with increasing numbers of friends dropping like flies due to cancer, and her deep seated desire to match make (!) me to her doctor, she would not have insisted on a biopsy.

Today, we urge everyone to pay closer attention to their bodies. To exercise extreme paranoia. To be a hypochondriac.

After all, Cancer Is A Bitch! Early detection save lives.

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Happy 60th Birthday Mommy … and many more to come.

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Subungual melanoma is a specific type of melanoma that occurs under the nail bed more commonly in dark-skinned people. Subungual melanoma causes a dark colored stripe that runs along the length of the nail plate , not across the nail. Just having a dark nail stripe is not necessarily melanoma. The following Signs make it more likely that a dark stripe is a subungual melanoma and should be evaluated by a dermatologist:

• Hutchinson’s Sign – Spread of pigmentation into the nail folds
• Pigmentation in a single digit
• Occurs at age 50 or older
• Occurs in the thumb, index finger, or great toe
• Blurred borders
• History of melanoma

© Penelope Gan – All Rights Reserved – Kuala Lumpur, MALAYSIA

I am HIV positive.

It’s not an easy phrase to say. Yet in April 2009, six brave people stood tall and proud and uttered these simple but profound words that would change their world.

In a country where HIV/AIDS cases were only publicly acknowledged and reported for the last 23 years, and where more importantly discrimination remains the main ‘killer’ for people living with HIV+, the notion of recording uncensored testaments by people living with HIV+ was unheard off.

Yet, through faith, perseverance, sensitivity, respect, responsibility and belief this project evolved from a few scratchy lines of far and between emails dating back to October 2008 between myself and the Malaysian AIDS Council (MAC) to one that has to date helped raised MYR 6 million in 5 months.

From an independent third party standpoint, the HIV/AIDS issue is no more than statistics which ironically is read far less than GDP figures, unemployment rates, road death tolls and even the latest EPL scores and winning lottery numbers.

Since the first HIV/AIDS cases were publicly reported in 1986 by the Ministry of Health, 84,630 HIV infections have been reported in this country and 11,384 people have AIDS as at December 31, 2008. The majority of new HIV infections are found in adults aged between 20 to 39 years, with transmission from intravenous drug usage (IDU) being the number one cause followed by infections via heterosexual intercourse. Although those with HIV/AIDS are predominantly male, the number of HIV+ infections amongst women has been increasing.

Being a woman myself, never has these words rung truer and deeper …

“Due to gender norms and inequalities, many women and girls lack the social and economic power to control key aspects of their lives, particularly sexual matters. As a result, women are in a difficult, and often impossible, situation when it comes to negotiating with their partners over abstinence, fidelity, or condom use.”

(Excerpt from: UNAIDS, 2006. Increase Women’s Control over HIV Prevention, Issue 4)

… as I sat in their bare and dimly lit kitchens and homes, documenting their lives.

Of the two women who welcomed me into their homes, lives, intimate secrets and dreams… both were ‘victims’ of circumstances – contracting HIV+ from life partners that were IDUs. When I walked into this photo-project, I had imagined the women to be bitter, resentful and possibly wallowing in self-pity but I was repeatedly proven wrong. Far from my own personal cynic outlook of things, these women living with HIV+ were spirited, positive and full of zest. What surprises me most was that although they live on to shoulder the burden of raising their children single-handedly with little means,  balancing their health related issues and faced with societal unforgiving discrimination and stigma, they showed no remorse or anger having contracted the infections through irresponsible husband and has coined the term “love disease”.

Their ‘hopes and dreams’ which includes witnessing the graduation and marriage of their children, to me, does not have a tinge of far fetched ambition, but I soon realised that while it relates to matters we take for granted, time is an essence with these brave women and though they may possess will power that could move mountains, their spirits are constantly dampen by their physical inability and unnecessary hurdles posed by us who do not and/or refuses to understand.

By standing tall and speaking from their hearts, these women hopes to spread the message of awareness and to inspire others that are living of HIV+ that it is still a life worth fighting for.

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The multimedia photoessays of  “Voices of People Living with HIV+” was released for selective viewing for fundraising purposes in May 2009 and will be made available only on the Malaysian AIDS Council website in due course. I would like to thank a personal friend of mine, Jimin Lai for having the faith in me and MAC to volunteer his time and photographic skills in this project as well.

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useful HIV/AIDS resources

The BODY |  WHO

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