January-February . 2025 | The HEALTH
RARE DISEASE DAY 09
Comfort beyond medication
A comprehensive care package designed to alleviate discomfort for GPP patients during hospital stays
IN A significant initiative to support patients suffering from Generalised Pustular Psoriasis ( GPP ), Boehringer Ingelheim , in collaboration with the Psoriasis Association of Malaysia ( PAM ) and lifestyle brand Oxwhite ®, has unveiled The Healing Kit - a specially curated care package designed to enhance comfort during challenging hospital stays .
UNDERSTANDING GPP
GPP is a rare and potentially life-threatening skin condition characterised by painful , inflamed skin and recurrent pustular flares . Unlike plaque psoriasis , GPP presents with sudden and severe symptoms , creating a distressing experience for those affected .
In Malaysia , the prevalence of GPP is recorded at 198 per million , with a notably higher incidence among women ( 267 per million ) compared to men ( 127 per million ). The condition is particularly prevalent among the Chinese population , affecting 271 per million , while Malay and Indian ethnicities report lower rates at 186 and 179 per million , respectively .
AGONISING HOSPITAL STAYS
Patients suffering from GPP often face excruciating discomfort during hospital stays , exacerbated by traditional hospital gowns and towels that can irritate their sensitive skin .
Ministry of Health ’ s ( MoH ) Dermatology Subspecialty Head , Dr Azura Mohd Affandi , highlighted the profound impact of GPP : “ The challenges experienced by patients with GPP go beyond the skin ’ s surface .
“ During acute flares , patients endure extreme pain due to the inflammation and fluid-filled pustules covering their body . Basic movements , such as walking or turning in bed , can be excruciating as their skin is inflamed and feels raw , and as a result , they are unable to perform even simple daily tasks .
“ Many GPP patients also experience social stigma as well as emotional and psychological distress , which severely reduce their quality of life .”
31-year-old GPP patient Kristina Siranjivi echoed these sentiments and stated : “ During a flare , my skin feels raw , and the pustules often ooze , making even hospital gowns unbearable . The discomfort can worsen my condition significantly .”
A THOUGHTFUL COLLABORATION
Understanding the complexities faced by GPP patients , Boehringer Ingelheim engaged in extensive discussions with both patients and dermatologists to create a care package that addresses their specific needs .
Boehringer Ingelheim Malaysia , Singapore and Indonesia ’ s Medicine Head , Dr Mohd Azhar Ahmad , expressed hope that The Healing Kit would provide comfort beyond medication .
“ Our conversations with people who experience GPP flares gave us a deeper understanding of the day-today challenges that they endure . We worked closely with patients and dermatologists during the development of The Healing Kit to ensure it truly meets their needs . We hope that The Healing
The Healing Kit contains two sets of hospital gowns made of soft , breathable fabric - one in calming green and another in bright orange and blue , all placed inside a sturdy army-green tote bag that is provided to patients upon registration with the PAM .
Dr Azura Mohd Affandi
Dr Mohd Azhar Ahmad
Sofia Lovi Ramasamy
Kit can offer comfort , beyond medication , to the patients .”
The Healing Kit features two sets of hospital gowns made from so ft , breathable fabric - one in calming green , designed for relaxation , and another in vibrant orange and blue , intended to uplift spirits during challenging moments . It includes high-quality bamboo-cotton towels , known for their skin-friendliness and absorbency , providing patients with a touch of luxury .
Additionally , the kit contains a patient journal filled with vital information and tips for managing GPP , which is especially beneficial for newly diagnosed patients navigating their journey . All items are neatly packaged in a sturdy army-green tote bag , symbolising strength and resilience , and provided to patients upon registration with PAM .
VOICES FROM THE COMMUNITY
PAM Interim President Sofia Lovi Ramasamy emphasised the importance of addressing both the physical and emotional challenges of chronic diseases like GPP .
“ Chronic diseases such as psoriasis and GPP , which have no cure and require long-term management , can be very debilitating for those living with it . It is not just a physical disease but one that affects patients ’ mental and emotional states .
“ The Healing Kit is a thoughtful initiative , and the comfort it offers helps patients to focus more on their recovery and be less consumed by the discomfort and pain that are typical of hospital stays .”
Oxwhite ® Founder C . K . Chang remarked : “ Everyone deserves to feel confident inside and out , and one way to achieve this is through what we wear .
“ What I learned about GPP was eyeopening for me ; the severity of pain that patients have to endure , even in hospital , moved us to collaborate on this project with Boehringer Ingelheim . We wanted to create a gown that not only looked contemporary but also provided comfort for GPP patients , whether they wear it in hospital or at home .”
As Kristina reflected on the significance of The Healing Kit , she stated : “ As a patient , The Healing Kit is significant to me as each item has been really well thought out and helpful for people like me to manage our symptoms more comfortably . Efforts like these make me feel seen and not forgotten .”
The Healing Kit is currently available to patients living with GPP upon registering with PAM . For more information and to access this essential care package , visit ( https :// www . psoriasismalaysia . org / healingkit ).
This initiative marks an essential step in addressing the unique challenges faced by GPP patients , offering them not just physical comfort but also a sense of understanding and support in their journey towards recovery . – The HEALTH