The arrival of a new baby can be exciting, but for families who suddenly find themselves having to deal with birth defects or rare diseases, the joy can quickly turn to pain, fear, and confusion. Questions about how to manage the disease, care for the baby, and live life likely run through the heads of parents dealing with these issues. Managing rare diseases requires patience and a diligence to work with physicians to understand the factors at play.
Understanding Rare Diseases and Birth Defects
The first key to living with a child or family member who has a rare disease is to understand how the disease works. Now, because there isn’t as much research out on rare diseases, it’s crucial to find a physician who deal with the disease so you can get answers to your questions. These doctors have both the scientific knowledge and practical experience to advise patients and families. They can provide insight and set expectations, and also connect you with a network of others experiencing the same issues.
Oftentimes having a community of likeminded individuals around to support you is one of the most important parts of coping with and managing a rare disease. With this community you’ll be able to discuss trials and tribulations, and
Assessing the Cost
Rare diseases often stress families both emotionally and financially. In fact, the cost of medications required to treat and manage rare diseases like cystic fibrosis, crohn’s disease, and ALS (Lou Gehrig’s Disease) can be astronomical. Many drug makers provide discounts and even free medications to families. Check with your drug manufacturer to see what’s available to you. Physicians often provide free samples for a time. And, pharmacies try to provide patients with discounts and credits when possible.
In addition to the cost of drugs, there’s also the cost of visiting specialists. In spite of most Americans now having health insurance, deductibles and the overall cost of insurance are rising. Many doctors do provide discounts for those who pay for their visits at the time of service. Additional option include payment plans and even fundraisers.
There are many online fundraising platforms that you can use to help support your needs. These websites allow friends, family, and complete strangers to donate to your cause. The key to successful fundraising is to tell your story in a compelling manner. When done well, you’ll find many people who are willing to give to your cause and help make a difference. In fact, fundraising for your cause is a great way to bring awareness to the disease and create an online community of support.
Managing and living with rare diseases isn’t easy, however, with diligent research, a team of experienced and knowledgeable physicians, and a supportive environment, navigating the challenges is possible. A supportive family and community can also make a huge difference in how your family experiences these circumstances.