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Happy Twins

Patient Resources

Welcome to our Patient Resources hub, where support and information come together. Whether you’re seeking guidance on rare skin conditions, financial assistance, or personal stories from our community, we are here to help. Explore trusted resources designed to inform, empower, and connect you on your journey.

Rare Skin Conditions

  • Urticaria Pigmentosa (UP)
    People with UP tend to have discoloured and itchy skin. Mast cells are a type of immune cells. In UP, there are many mast cells on the skin, which give out histamine resulting in the dark rashes or hives, especially when the skin is rubbed. This condition can be seen in all age groups but usually presents in infants or children. Sometimes the mast cells may affect the rest of the body causing allergic symptoms. Diagnosis can be confirmed with a skin biopsy. ​The condition is treated with antihistamines when needed and avoidance of certain histamine-containing food.
  • Bullous Congenital Ichthyosiform Erythroderma (BCIE) or Epidermolytic Hyperkeratosis (EHK)
    Children with this condition present peeling skin and blisters at birth. The skin then becomes red with erosions. Scaly, dry, red, raw and thickened skin may develop later on and there is a higher risk of skin infection as the normal skin barrier is disrupted. This is caused by an abnormality in the skin proteins (Keratin 1 and 10). ​Treatment is with emollients and a medication similar to Vitamin A in severe cases.
  • Autosomal Recessive Congenital Ichthyosis (eg. Lamellar or Harlequin Ichthyosis)
    Due to the mutation in genes encoding the formation of skin cells, these babies are born with a thick membrane encasing their skin. As the skin is tight, movement of the chest wall, eyes, mouth, fingers and toes may be affected. Large brown and thick scales can develop after and there may be a higher risk of skin infections. The condition is treated with emollients and a medication similar to Vitamin A.
  • Netherton Syndrome
    Those afflicted with Netherton’s Syndrome often present with red, dry, itchy and scaly skin, hair and scalp abnormalities, a compromised immune system, increased susceptibility to skin and systemic infections, dehydration, hypernatremia, temperature dysregulation, allergies, asthma and eczema. They have red, itchy, scaly skin with sparse and brittle hair and itch is a frequent problem. Due to the impaired skin barrier, they can also have problems with temperature regulation. They are also prone to poor weight gain, allergies, asthma and eczema. Teeth growth may also be affected.
  • Incontinentia Pigmenti
    This is a genetic syndrome which can result in skin, eyes, teeth and brain abnormalities. The abnormal gene is located at the gene which encodes for gender. Females with an abnormal copy of the gene will get this condition. They can have vesicles at birth, which then become warty. The affected skin then becomes more pigmented before becoming lighter than the usual skin tone. Patients with the condition may require frequent follow-up with the dentist, ophthalmologist and neurologist. ​
  • Vascular Anomalies
    Are a group of blood vessel conditions that may present at birth or in the first few weeks or months of life. Sometimes they may even present after a few years. Categorized into 2 broad groups, vascular tumours and malformations range from mild to severe conditions. While most cases are isolated, some may be associated with other organ abnormalities such as the brain, spine, eye, heart and/or bones that can lead to significant physical, psychological and emotional impairment. ​ ​The more complex cases will require multi-disciplinary treatment in centres specialising in the management of complex vascular anomalies.

Financial Reimbursements

Like any rare disease, rare skin conditions are chronic, and require lifelong treatment and care as there is no known cure. Individuals afflicted with rare skin conditions also require long-term multidisciplinary support from the various specialities, with many of them starting from as young as infancy.

Apart from providing a safe haven and support system for these children who were born with a visible condition, the team at RSCS also aims to support its patient members by subsidising their medical bills from hospital visits and long-term medications, in hopes to lighten the financial strains on these families.

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