How to Support Your Child’s Rare Disease 


No one loves a child quite like their parents. On average, parents spend 37 hours a week worrying about their children, which includes their physical and mental health. However, not all parents witness a fulfilling childhood for their kids. More than 40% of school-aged children in the U.S. have a chronic disease, among which 15 million suffer from rare diseases. 

Unlike other illnesses, rare diseases introduce increased uncertainty into the equation. Doctors are often unsure about diagnosis and treatment, resulting in multiple hospital referrals and adopting treatments that yield no results. All of this puts added pressure on the patient and their parents. 

If your child suffers from a rare disease, you must be strong-willed and constantly supportive. Their illness may be untreatable, but you must maintain normalcy in your kids’ lives without giving up hope. Here are a few things to remember to continue supporting your child’s rare disease. 

1.Do Not Blame Yourself 

Usually, parents blame themselves for their child’s misfortune. They often say, “If only we were more financially stable or more present in our child’s life, we could have prevented them from contracting the disease.” However, note that this approach can harm your child and, obviously, you. 

Your child may be unable to comprehend the situation’s gravity, leading to frustration. In such times, you must remain mentally strong and create an environment where your child feels comfortable relying on you instead of bottling up their emotions and spiraling into depression. 

Not blaming yourself does not mean you cannot experience grief. Many ambitions you have attached to your child may remain unaccomplished, and they might no longer lead a regular life. It is natural to feel a sense of loss and encounter negative emotions in such situations, but you must remember to portray a calm demeanor when interacting with your kid, providing them the reassurance they need. 

2.Conduct Careful Research 

Typically, people immediately reach for Google to gain insights on a topic they do not understand. However, note that in the case of medical treatments and diagnosis, Google may only lead you down a rabbit hole of false information. Remember that your computer can not examine the patient and understand their symptoms, so it often presents a misdiagnosis and incorrect treatment methods. If you are curious about your child’s rare disease, reading certified medical journals and research papers or consulting various doctors are some better choices.

3.Find an Online Community 

In rare diseases, your child may feel isolated from the rest of the world and will limit interactions with friends and peers. To maintain a healthy communication, consider introducing them to other people suffering from the same rare illness. You can find online forums dedicated to a rare disease where patients can freely communicate about their experiences and develop a bond. 

An online community is also very informative. You can talk to other patients and their loved ones about how to best support someone suffering from the illness and spread information about new treatment developments. However, ensure the information you receive from the online community comes from a trusted source before relying on it. 

4.Find the Right Physician 

For rare disease patients, it is essential to find the correct physician. Primary care physicians and local experts do not have experience with rare diseases, so you must reach out to specialists who have worked on a similar case to your child’s for the most effective treatments. If you live in a remote or rural area, chances are you will have to relocate to treat your child. 

Do not rely upon hearsay for the correct physician. Instead, conduct your own research by talking to specialists, reading medical journals, and searching through the National Organization for rare disorders (NORD) website. Also, remember not to consult with multiple doctors simultaneously because every doctor can have a different approach. And numerous treatments at the same time can lead to adverse outcomes. 

5.Try Compounding Medication

Compounding medication is a custom medication required when FDA-approved medicines in the market do not fulfill the patient’s needs. In rare diseases, doctors often prescribe compounding medicine because the disease’s uncommon nature does not warrant a commercially produced medication. 

And sometimes, if the medication is available in the market, its dosage may be too high for pediatric requirements. So compounding medicine allows pharmacists to produce the correct dosage for your child’s age and body weight. Similarly, compounding medicine removes any allergen ingredients the medication may have that would adversely affect your child. 

For reliable compounding medication in Arizona, contact the best compounding pharmacy Phoenix has to offer to ensure nothing goes wrong with the medication’s formula. 

6.Participate in Clinical Trials 

Research is constantly happening for rare diseases. And sometimes, you will find that researchers conduct clinical trials to assess their drug or treatment’s credibility. These clinical trials offer some of the most advanced treatments for the specific disease and provide an opportunity and chance of recovery for your child. You must regularly visit the government’s clinical trial website to see if any research suits your kid. 

Going into the clinical trial, you must acknowledge that the chances of finding an effective treatment for your child are slim. The treatment that worked on another patient doesn’t guarantee that it will also work for your kid. While it is good to be hopeful, you should not build false hope in your child only for them to be disappointed, impacting their mental health. 

7.Prioritize Your Child’s Health 

Your child’s immune system is already busy battling with their rare disease. To ensure your child’s condition does not worsen, you must maintain a healthy lifestyle for your child. Ensure your kid follows a balanced diet and has regular exercise. You must encourage playing in the sun and help them build strong connections with their peers. All these considerations will help develop your child’s immune system and perform better against foreign invasions. 

If your child contracts another illness, even a slight cough, consult their doctor immediately and take proper treatment measures. Since your child’s immune system is already under attack, even a minor health infringement can develop into something more severe. 


Having your child diagnosed with a rare disease is a parent’s worst nightmare. However, this does not mean you should lose hope. Your child will look towards you for support in times of uncertainty, and you must show them how to best deal with the situation. Above are some best practices you can implement to support your child. With a positive and reassuring attitude, you can help your child seek the most effective treatment and help them live a somewhat regular life. 



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