Tips for Parents to Take Care of Children with Rare Diseases


Children are a priceless treasure for parents. Therefore, in this world there are no parents who want their children to get sick, especially rare diseases. However, if indeed fate says so, the only thing that can be done is to continue to accompany the child until his condition improves.

Rare disease or rare disease is one of the real threats that occur in the community. The disease is said to be rare when less than 2000 people experience it. In addition, this disease is usually also associated with congenital genetic and metabolic diseases. The name of the disease is usually difficult to mention and may almost never be heard in your ear.

In general, based on data collected, there are more than 7,000 types of rare diseases that have been identified and affect more than 350 million people in the world. This disease accounts for a mortality rate of 35 percent in the first year.

In Indonesia, according to Dr. Dr. Dama, which is an expert in rare diseases, around 100 people were exposed to rare diseases with 65 patients diagnosed successfully.

The challenge of caring for children with rare diseases

Rare diseases have challenges that are not little related to care and treatment. One of them is quite expensive medical expenses. According to Peni, Chair of the Indonesian MPS Foundation and Rare Disease, the cost of rare disease drugs can spend 6 billion per year.

In addition, usually people with rare diseases must also drink special milk whose price can reach Rp. 37 million per month. Diagnosis also becomes another serious challenge. The same symptoms with other diseases ultimately make most doctors misdiagnosed.

Finally, the stigma from the community is another challenge for rare disease patients or parents who treat patients with the disease. Usually, people still consider rare diseases a curse from God.

However, if your child has a rare disease, don't be discouraged. Prioritize his recovery by making various efforts, including accompanying him during illness. Ways to treat children with rare diseases
Caring for children with rare diseases needs special skills and extra patience. This is also what actress Joanna Alexandra is doing. His heart, 21-month-old Ziona Eden experienced campomelic dysplasia (CMD).

CMD is one of the rare diseases in the world. This disease is characterized by genetic abnormalities that affect the development of the sufferer's reproductive framework and system. CMD is often life-threatening in newborns.

At present, Joanna and her husband routinely bring their children to be examined. In addition, he also sought his child to get the best care. Reflecting on Joanna, here are some tips for caring for children with rare diseases:

1. Find the right doctor for the diagnosis
If you are not satisfied with the results of a doctor's examination, you can check your child to another doctor to make sure. Taking second opinions is often done by people to establish the diagnosis of the disease.

But as much as possible, also equip yourself with enough information to be able to ask many questions to the doctor regarding the condition of the Little One. This can be learned from what Joanna experienced. Initially, Joanna and her husband only focused on foot treatment and the function of swallowing their children, according to the doctor's diagnosis.

At the age of 11 months, he decided to take a second opinion, and after passing various types of tests, his baby was diagnosed with rare diseases campomelic dysplasia (CMD). Joanna told her chronology when met at the commemoration of World Rare Disease Day last February.

2. Avoid stress by surrendering

One of the keys to caring for children with rare diseases is to surrender and surrender to God, as did Joanna. He believes there is a good purpose for God in his life when faced with Zio's condition experiencing CMD.

"It's actually easy (to get out of stress), just surrender to God. It's the most extraordinary thing that can be done and the most effective. Even though it was initially difficult," said Joanna. He claimed that rare diseases in his children made him more patient, strong, and smart in taking care of children.

3. No need to ignore people's scorn

Indeed, for some rare diseases can be considered a layman as a "curse disease". This usually happens in villages or small towns. As a parent, you don't need to listen to what people are talking about. Stay focused on healing your child.

4. Family acceptance

Acceptance of extended family about rare diseases suffered by children can help you in caring for your baby. This always gives enthusiasm to continue to try to provide the best for children, so that his condition is getting better.

5. Active in the community

Entering the community with people who share the same fate is also good for the learning process and understanding your child's condition. This was also done by Joanna who is now active in the MPS Foundation and Indonesian Rare Disease.

He claimed that being in the community helped make him motivated to be a good parent for his child and an example for other parents who shared his fate.

So, rare diseases in children may still be rarely diagnosed, so sometimes it is considered a "curse". That is why caring for a child with an unknown disease is not easy. However, parents who have the same fate can apply the above tips and learn from Joanna Alexandra's experience in caring for her baby.

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