Nephrotic syndrome is a condition where proteins, which the body needs, leak into the urine from the blood because of damaged kidneys. It can affect anyone, from toddlers to teens and adults. 

The most common symptom experienced by patients living with nephrotic syndrome is swelling, such as of the eyes, feet, and abdomen. Other symptoms include fatigue, lack of appetite, and weight gain because of retained fluids in the body.

When the kidneys have been severely damaged, they would have to be removed and the patient would need to undergo dialysis. Some patients get a kidney transplant although there are cases when the new kidney is also damaged eventually.

Nephrotic syndrome can be idiopathic, which means the cause is unknown. It can also be congenital, or when both parents have a faulty recessive gene that was passed to their child. There are also cases that are caused by other conditions such as an autoimmune illness, cancer, and infections like hepatitis B.

There is no doubt that the symptoms of this condition are already a lot to deal with. And yet there are still other challenges that come with living with nephrotic syndrome. Below are just some of them. 

1. Hospital visits. Since they are living with a chronic condition, people living with nephrotic syndrome usually visit the hospital on a regular basis. This is especially the case for the patients who undergo dialysis. 

Needless to say, frequent visits to the hospital take time away from other things. In the case of younger patients, they would have to miss school or a field trip. For older patients, it could mean skipping days at work or working from home so they could better attend to their medical needs.

2. Side effects from treatment. From steroids alone, the usual medication to be prescribed, patients may experience a long list of side effects. Some of the more common are increased appetite and weight gain, having acne and swollen face, and mood changes. 

In the case of patients whose kidneys were removed, they would have to deal with the side effects of dialysis such as low blood pressure, fatigue, itchy skin, nausea and vomiting, among others.

Imagine for instance a high school student who, aside from dealing with all the changes brought about by puberty, is also gaining weight and has a swollen face because of steroids. Or imagine an adult who had to leave a job they love because of frequent fatigue and nausea due to regular dialysis sessions. The side effects from medications can undoubtedly have a huge effect on the patient’s life.

3. Being different from peers. For the kids and teens, having a chronic illness separates them from other people their age. Unlike their friends, they have symptoms to deal with and need to take medications. A hospital visit for them can be as ordinary as going to the park and they are usually surrounded by medical staff. 

Most of them, however, just want a life any ordinary kid has. But since this is not the case, they just make the most of the days they feel better and enjoy time with friends and family. It’s also not unusual for them to avoid letting other people know about their condition so they wouldn’t have to talk and think about it all the time.

4. Relationship challenges. Especially for adults, having a chronic illness can pose some challenges in their relationship with their loved ones. For one, it’s not easy for the patient to make other people understand what exactly they are experiencing. Even if their loved one is with them all the time and gives full support, there still are things only those with the same condition can truly understand. This can then cause communication problems which, if not addressed properly, can put a strain on the relationship.

There is no question that nephrotic syndrome is a serious condition. The symptoms patients have to deal with can severely affect their quality of life. But their challenges do not stop there. The different things they have to do to manage their condition also have negative effects. 

It may seem a small thing, but learning about these challenges can mean a lot for patients living with nephrotic syndrome as well as for their families. It enables other people to be more understanding and show more compassion. 

Share this blog so that more people would learn about the effects of nephrotic syndrome on the patient’s life. And if you or someone you know is dealing with nephrotic syndrome, join our Living with Nephrotic Syndrome community and get in touch with other people who can truly understand.