10 Reasons Why You Should Advocate for Your Child with a Rare Disease

 

One of the biggest things and words I learned early on when asking so many questions of the nurses and doctors working with Dot was "Advocate". At the time it didn't make much sense to me because I was doing what I assumed most every other parent or family member would do in my place, asking the questions. Literally asking questions about anything and everything I simply didn't understand. Why did they put Dot on a certain medication, or why do they use this machine, what does it do? Why are we keeping her on an antibiotic if she doesn't ultimately need it for what we thought she did?

Advocating for your child who has a rare disease can be a daunting task, but it is also an important and necessary one. Here are the top 10 reasons why you should advocate for your child:

1. To get a diagnosis: Many rare diseases have symptoms that are similar to more common conditions, which can lead to misdiagnosis or a delay in diagnosis. Advocating for your child can help ensure that they get a proper diagnosis and the right treatment.

2. To get the right treatment: Many rare diseases have no known cure and few, if any, FDA-approved treatments. Advocating for your child can help ensure that they have access to the best possible treatment options.

3. To get the best care: Rare diseases often require specialized care, such as from a specialist or at a specialized center. Advocating for your child can help ensure that they receive the best care possible.

4. To get the necessary accommodations: Children with rare diseases may need accommodations at school or in other settings to ensure their well-being and success. Advocating for your child can help ensure that they get the accommodations they need.

5. To get access to clinical trials: Clinical trials can be an important option for children with rare diseases, as they can provide access to experimental treatments that are not yet widely available. Advocating for your child can help ensure that they have the opportunity to participate in clinical trials.

6. To get financial assistance: Rare diseases can be expensive to treat, and families may need financial assistance to cover the costs. Advocating for your child can help ensure that they receive the financial assistance they need.

7. To get emotional support: Rare diseases can be emotionally taxing, and families may need support to cope with the challenges they face. Advocating for your child can help ensure that they receive the emotional support they need.

8. To get involved in the rare disease community: Connecting with others who have rare diseases can be a valuable source of support and information. Advocating for your child can help ensure that they have the opportunity to connect with others in the rare disease community.

9. To raise awareness about your child's rare disease: Raising awareness about your child's rare disease can help increase funding for research and treatment, as well as provide support for other families affected by the same condition. Advocating for your child can help ensure that their rare disease is recognized and understood by others.

10. To make a difference: Advocating for your child is an opportunity to make a difference in their life and the lives of others affected by rare diseases. By advocating for your child, you can help improve the lives of people living with rare diseases and pave the way for a brighter future.

Advocating for your child with a rare disease can be a challenging, but ultimately rewarding, experience. By taking an active role in advocating for your child, you can help ensure that they get the care, support, and opportunities they deserve.

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