Living With a Rare Disease: Finding Support When You Have IgA Nephropathy

IgA nephropathy (IgAN) isn’t all blood tests and doctor visits. Managing a rare medical condition is difficult work that changes how you live your life. And it can take a real toll on your mental and emotional well-being.

“IgA nephropathy is a lifelong disease,” nephrologist Salem Almaani, MBBS, says. “Dealing with a chronic medical condition is generally stressful, even if it’s going well.”

You don’t have to face IgAN alone. Dr. Almaani explains why a strong support system can make a big difference in your kidney health and offers tips for building yours.

How your support system impacts your kidney health

For many people, living with a chronic kidney disease like IgAN also means living with stress, anxiety and depression. It’s not that the condition causes mental illness directly. It’s that having a rare condition can wear on you.

Having a community and a care team to lean on when times get tough isn’t just comforting — it can help your kidneys function better for longer.

“Mental health and physical health are very interconnected for people with chronic kidney diseases,” Dr. Almaani says. “We know that stressful conditions can trigger immune responses, which can affect disease activity.”

Feeling cared for can lower stress and make it easier to stay motivated. That’s important because managing IgAN involves:

• Monitoring your health
• Taking your medications
• Getting plenty of rest
• Eating a kidney-friendly diet
• Maintaining an active lifestyle

Having a well-rounded support system can make it easier to keep up these and other habits that protect your kidney health.

Elements of an IgAN support system

A good IgAN support system is wide-ranging, tailored to your needs and able to adapt as those needs change. Here are some areas worth focusing on.

Educational resources

“Knowledge is power,” Dr. Almaani says. It also lays the foundation for your support system. When you understand what IgAN is and how your condition is progressing, you’re more likely to:

• Ask the right questions
• Make informed decisions
• Play an active role in your care
• Understand (and advocate for) your needs

Your IgAN education will only be as good as the resources you draw from. That’s why you should stick to credible, evidence-based resources, like:

• The IgA Nephropathy Foundation
• The National Kidney Foundation
• The American Kidney Fund

Research on IgAN is progressing rapidly. That’s good news. But it can also make it hard to keep up. Write down any questions that come up in your reading and discuss them with your nephrologist. They’ll make sure the information you’re getting is reliable and up to date and point you toward other trusted resources.

Your clinical care team

Managing IgAN isn’t a one-person job. Kidneys are complex organs that can affect your health in many ways, so you may find yourself working with several different specialists over time.

Think of yourself as the coach of your care team, and your nephrologist as the team captain. They’ll take the lead in your care, involve other experts as needed and offer advice. But when it comes to making big decisions about your treatment, you have the final say.

Who’s on your IgAN care team depends on your overall health and how well your kidneys are working. Here are some of the most common players.

Mental health providers

Protecting your mental health is key to protecting your renal health. That’s why Dr. Almaani recommends working with a therapist and (if needed) a psychiatrist.

• A therapist can support you as you process your IgAN diagnosis — and help you develop the coping skills and resilience to thrive with a chronic illness.
• A psychiatrist can help diagnose and treat mental health conditions that you’re already living with (or that arise from the stress of living with kidney disease).

“I don’t think of mental health support as optional in IgAN,” he emphasizes. “It’s worth at least seeing a provider once and hearing what they have to say.”

A primary care provider

A primary care provider is the member of your care team who’s focused on your overall health and disease prevention. They’re also the healthcare professional who’ll handle the day-to-day management of chronic conditions that affect your kidneys, like:

• High blood pressure
• Diabetes
• Overweight and obesity

If your needs change, they’ll connect you with the healthcare professionals you need to manage your symptoms.

For example, there’s a connection between chronic kidney diseases and sleep apnea. If you find you’re not getting the rest you need, your primary care provider can refer you to a sleep specialist for testing.

A social worker

Social workers are experts in the practical side of living with chronic illnesses like IgAN. And like doctors, they can specialize in certain types of care. So, depending on your needs, you may work with one or several at different times.

You may turn to a social worker for help:

• Applying for disability benefits
• Navigating insurance and other financial questions
• Connecting to community services
• Preparing for dialysis or a kidney transplant

A renal dietitian

Diet plays a key role in managing IgAN — and it becomes even more important as your kidney function declines. Your nutrition needs also change if you’re on dialysis.

A renal dietitian can teach you the basics of a kidney-friendly diet and advise you on topics like:

• Grocery shopping
• Kidney-friendly recipes
• Meal planning
• Eating while traveling or dining out
• Adapting your favorite meals

Loved ones, caregivers and community resources

Having a strong network of healthcare professionals in your corner can make a big difference in your experience with IgAN, but your social circle can have just as big an effect. Dr. Almaani explains why.

Support groups

Having an uncommon medical condition like IgAN can feel isolating. But joining online or in-person support groups can help. They offer a forum to share your experiences, ask questions, make friends and process the feelings that come with having a lifelong chronic illness.

If you can’t find a support group you like that’s dedicated to IgAN, try a kidney disease support group instead.

“These communities offer a lot of support from an emotional standpoint,” Dr. Almaani says, but he cautions against turning to patient groups for medical advice.

IgAN is a complex condition — there are multiple different types, and everyone’s condition progresses differently. One size definitely does not fit all when it comes to kidney care. So, enjoy the camaraderie and bring any questions or concerns that come up to your care team.

Loved ones and caregivers

They may not be experts in IgAN, but your family, friends, partner and colleagues often have the greatest impact on your quality of life. From keeping track of your medications to making you laugh, your loved ones and caregivers can make the day-to-day realities of chronic illness easier to manage.

Whenever possible, Dr. Almaani recommends bringing a support person with you to your appointments. “Nobody really retains 100% of what happens during that interaction,” he notes. “Having a second set of ears is great. Your support person may perceive what your provider says differently and, as a result, have different questions.”

Building your support system

If you’re reading this and thinking, I don’t HAVE a support system, that’s OK. Your providers understand that not everybody has a safety net already in place.

Turning to your providers for guidance is a great way to get started building yours.

“We know you’re going to go home after your appointment and think about how you’re going to deal with IgA nephropathy,” Dr. Almaani empathizes. “We’re asking those questions, too.”

To get started, make a list of what you need — and what you expect you’ll need in the future. Bring that list to your next appointment and talk through it with your nephrologist.

It may take time, but you can find a path forward, and people to walk it with you.