Rare disease patients remain one of the most underserved medical populations, and they often have to deal with debilitating symptoms or complications that can make daily life difficult. For example, many rare disease patients have to take extra precautions during flu season, a common illness that can prove to be more dangerous in those with underlyng conditions than those without.
In an interview with Randy Gordon, he discusses living with chronic granulomatous disease, or CGD.
This condition significantly hampers Randy’s immune system, and he is more vulnerable to a variety of infections when compared to the average person. Read below to find out what it takes for Randy to make it through flu season, while living with CGD. To learn more about CGD, click here.
- Randy, I just want to say thanks again for being willing to speak with me today. I did a little reading up on CGD, but would you be able to give a brief description of CGD for our readers?
RANDY: Sure. CGD is a very rare disorder that only affects 1 in every 200,000 people. When you have CGD, your immune system is compromised. You are not able to fight off a lot of infections, particularly bacterial and fungal infections. You basically have to be very aware of your surroundings at all times and maintain a very clean living space and lifestyle. But avoiding areas where you might be more likely to get exposed to infections is essential. It is usually a good idea to avoid situations with a lot of dust or strong wind. You can basically get an infection anywhere that bacteria can enter the body, but for me my gastrointestinal tract is what is most commonly affected. The urinary tract has also been a problem for me, and there are some lung problems as well.
2. What was your first memory of your disease?
RANDY: Well I was basically diagnosed immediately along with my brothers; five of the eight of us have CGD. I have been taking medication for it as long as I can remember. But the first time when I really started to take it seriously was when I got a urinary tract infection when I was seven years old. That was a bit of a wake-up call for me. It can be a hard disease to diagnose, in a lot cases doctors think that the symptoms are from a more common disease. It doesn’t help that the symptoms can vary a lot from person to person.
3. If you met someone who was recently diagnosed with CGD, what would you say is the first thing you would tell them?
RANDY: Well it can definitely be a bad feeling to get diagnosed with CGD. Sometimes it feels like you have to live in a bubble to keep from getting an infection. But the reality is that CGD can be managed, and sticking to a healthy, clean lifestyle and a regular treatment regimen is critical. Just be aware of your surroundings but don’t let CGD get in the way of doing what you want to do; it’s going to be okay.
4. Clearly this condition affects the function of your immune system significantly. Compared to a person that is unaffected by CGD, what are some challenges that you face during the flu season? Are there specific precautions that you have to take?
RANDY: A lot of it just means making sure your surroundings are clean. Make sure your living space is well ventilated with clean, fresh air. Things like dust and mold have to be managed closely. It is also important to know in the back of your head when you could possibly be getting exposed to infection. I definitely make sure to wash my hands frequently. I try to hold my breath or wear a mask in dusty situations. Gloves are also a good precaution to take sometimes.
5. Now are these steps that you have described things that you have been instructed to do by a medical professional, or have you had to learn what works best for you by personal experience?
RANDY: A bit of both, but my doctor was definitely good at helping me understand my diagnosis. My doctor was also good about making sure I was keeping up with staying healthy.
6. What is the number one tip that you would give to people with CGD for staying healthy in flu season?
RANDY: You really just have to make sure to stick closely to your treatment plan, and to remain vigilant and aware of your surroundings. I work at a restaurant in the local mall and that was probably how I got the flu earlier in the season. I made myself more vulnerable by trying to work a few extra hours and then I ended up getting too tired.
7. Sounds like good advice, Randy. Now I am sure you are aware that the threat of flu season can obviously be an intimidating experience for people with rare diseases. Do you have any suggestions to help people with rare diseases feel less isolated when it comes to facing this challenge?
RANDY: Well it definitely helps to do some online research to learn more about CGD and make it feel less scary. I have found CGDConnections.com to be a great resource for support and information. Nobody has to be perfect, and every single person has their own struggle, and mine is CGD. This is not something that I can really get rid of or change, so I cannot let it slow me down. Just live a strong life and be bold, the disease can only stop you if you choose to let it. It helps to meet other people with the condition and since most of my brothers have it too it helped to know that we were dealing with it together growing up. You don’t have to feel or be ashamed to explain your condition to other people, and there is no point in being too hard on yourself.
Thanks again Randy, we really appreciate your willingness to talk about CGD and help encourage other rare disease patients!