Oculocutaneous Albinism: Treatment, Cost and Side Effects

Oculocutaneous albinism is a very rare form of disease that affects the skin, hair and eyes of a person. In India, only around 1 Lakh people are affected by it every year. Any kind of albinism affects the skin colour and OCA is no different in this regard.

OCA can be divided into four parts, namely, OCA1, OCA2, OCA3, and OCA4. OCA1 is caused due to an issue with the tyrosinase enzyme and can be further divided into OCA1a and OCA1b.

• People suffering from OCA1a completely lack any melanin in their skin cells. These people will have white hair and pale eyes and very pale skin.
• OCA1b is not as severe as OCA1a, as people suffering from the former will have a bit of melanin in their body. However, the levels are much lower than normal, which may cause pale skin and slightly discolored eyes.
• OCA 2, on the other hand, is a less severe form of the disease as compared to OCA1.
• OCA3 is caused due to a defect in the TYRP1 gene, while OCA4 is caused due to a defect in the SLC45A2 protein.

There is no cure for the disease, but with a few preventative measures, the symptoms can be kept under control. Since, it is a genetic and hereditary disorder, there is no way to prevent the condition from setting. If the parents suffer from albinism, there is a greater risk that their children will also be born with the condition. However, parents may be carriers for the disease, which can be transmitted to the offspring.

Apart from the skin, hair and eye pigmentation issues, the disease may also lead to vision disturbances, which include strabismus, sensitivity to light, astigmatism, blindness and nystagmus. Genetic testing is the best diagnostic procedure to confirm the presence of the condition.

As for the treatment, most doctors do not offer medication to patients, as it is a lifelong condition that cannot be cured. However, patients must keep certain things in mind if they want to prevent further deterioration of the condition. Preventive measures include wearing sunglasses, sunscreen and protective clothing when stepping outside in the sun. Often eye glasses or even surgery of the eye is required to rectify certain conditions related to OCA.

People who have been diagnosed to be suffering from one of the types of the OCA should seek treatment from a qualified physician. However, there are very limited number of things that you can do. For instance, only if there is a problem with your vision, you can get a glass or opt for a surgery inside the eyes.

There is cure for albinism and therefore medication for the condition is rarely used. However, medication may be prescribed to control the symptoms ranging from the albinism. In case of eye surgery, the patient may suffer from severe side effects. For instance, there may be an infection after the procedure or the patients may become visually impaired or blind for quite some time.

OCA is a lifelong condition, which cannot be cured. However, this form of albinism does not disrupt the life span of the people affected. People suffering from the disease will likely have to limit their outdoor activities and avoid the sun as much as possible. Moreover, OCA affected people are at a greater risk of developing skin cancer. Complete vision loss is also not uncommon in these people in case of overexposure to the sun and UV rays.

People with albinism do not recover from the condition. No matter how careful they are and how limited their UV rays exposure is, these people will need to spend their entire lives with the terrible disease. Eye surgery and eye drops may provide temporary relief, but the irritation may return at a later point of time.

Price of treatment depends on the kind of treatment sought. A person with OCA can stay relatively healthy without the need of medication. However, if the symptoms are severe, the cost of treatment may range from Rs. 500 to Rs. 5,000. Furthermore, if the eye surgery is required, the cost may go up to Rs. 25,000.

Results of the treatment are temporary and does not cause any change in the melanin production of the body. The overall pale complexion along with the pale eyes and the hair colour will remain the same. However, the treatment may result in some relief regarding the issues of the eyes.

Safety: High

Effectiveness: Very Low

Timeliness: Very Low

Relative risk: Low

Side Effects: Low

Time for Recovery: Very High

Price Range: Rs. 500 to Rs. 50,000