caregivers

I often have to explain my son Cayden’s rare disease to medical professionals. But sometimes, they need more help than I can offer. While my knowledge of Pompe disease is pretty advanced, there are some questions I just don’t have answers to.  Cayden, 3, has been…

Every time I experience something scary with my 3-year-old son, Cayden, it really takes a toll on my mental health. While this is to be expected, it’s certainly not easy to deal with.  I fell into a deep depression after Cayden was diagnosed…

Getting a six-and-a-half-hour enzyme replacement infusion once a week can be stressful. And I’m not even the one getting it. My son, Cayden, 3, gets an infusion called Lumizyme (alglucosidase alfa) to treat his infantile-onset Pompe disease. While the infusions have become routine for…

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…

Prior to giving birth to my now 3-year-old son, Cayden, I was working part time at a local fast-food restaurant. But when Cayden was born and we discovered he has infantile-onset Pompe disease, working was no longer an option.  As a single parent, I am the…

In a perfect world, we might expect doctors and nurses to know about every medical issue that could possibly arise. However, this just isn’t possible. Although these professionals go through many years of schooling, they can’t be taught about every disease, especially if it’s a rare one. Over the years,…

Being the parent of a special needs child can be difficult in many ways. One challenge is the effect it has on mental health, which makes self-care essential for parents of special needs children. But it also can take a physical toll on the body. One way parents can…

I’ve previously discussed how doctors and nurses can help in difficult times of health crises. But family and friends can be a big help, too. My 3-year-old son, Cayden, has been hospitalized in recent weeks, so I’ve pondered some of the ways that my family and friends have…

The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…

Dealing with stressful situations can be hard for anyone, but I’m especially struggling because my 3-year-old son, Cayden, has been hospitalized since Aug. 5. In my previous column, I mentioned that he had to be intubated due to pneumonia. This has been very hard on me mentally. And because…