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If you’ve been diagnosed with IgAN or suspect that you may have the disease, finding a knowledgeable and experienced nephrologist or IgAN specialist is crucial to managing your symptoms and receiving appropriate treatment. But where do you start?
First, consider talking to your primary care provider about your concerns and asking for a referral to a nephrologist or IgAN specialist in your area. They may also provide you with a list of specialists who accept your insurance.
When looking for a specialist, it’s important to know what to look for. You’ll want to find someone who has experience treating patients with IgAN and who stays up-to-date on the latest research and treatment options.
In the following sections, we’ll detail what to look for in a specialist, how to find a nephrologist, and what you need to know about your treatment options. By doing so, you can be sure that you’re receiving the best possible care for your IgAN.
If you have been diagnosed with IgAN or suspect that you may have the disease and are looking to undergo IgA Nephropathy genetic testing, it's important to see a nephrologist, a doctor who specializes in kidney diseases. Here are some steps you can take to find the specialist that’s right for you:
Finding the right specialist for your IgAN care can make all the difference in your overall health and quality of life. When seeking a specialist, it’s important to consider the following factors:
Experience and Knowledge: Look for a specialist who has experience treating IgAN specifically or who is knowledgeable in the field. This may involve researching the specialist’s education, training, and certifications. Additionally, consider asking the specialist about their experience with similar cases and what approaches they recommend.
Communication and Support: Your specialist should make you feel heard, respected, and informed. This means being open to your questions and concerns and taking the time to explain your condition and treatment options clearly. A good specialist should also be accessible and responsive to your needs and questions, both in-person and through electronic means.
Collaboration and Coordination: A specialist should work collaboratively with other healthcare providers to ensure seamless and integrated care. This may involve communicating with your primary care physician, other specialists, and your care team to ensure everyone is on the same page regarding your care. Additionally, your specialist should be up-to-date with the latest research and treatment options and be willing to discuss them with you.
Access to Tools and Resources: Your specialist should have access to the latest tools and resources to help manage your IgAN effectively. This may include advanced diagnostic tools, treatment options, or access to clinical trials. Additionally, tools like PicnicHealth’s timeline can help streamline communication and sharing of your medical history with your entire care team.
By considering these factors when finding a specialist, you can ensure that you receive the best possible care for your IgAN.
Becoming familiar with IgA Nephropathy treatment guidelines is important when deciding between specialists and treatment plans. For example, you will likely want to leverage several different approaches. Here are some options to consider when seeking treatment:
In late 2021, the FDA approved Tarpeyo (budesonide) for IgA Nephropathy. It has shown promising results in clinical trials and may help to reduce protein levels in the urine, preventing inflammation that can cause declined kidney function or even failure. More recently, in February of 2023, the FDA approved Filspari, a once-daily oral medication designed to target two pathways capable of slowing the disease progression of IgAN. However, it’s important to speak with an IgAN specialist before starting Tarpeyo, Filspari, or related drugs or treatments. They can run tests and assessments to determine which course of action may be best for you.
You might also consider partnering with Picnic Health to change the future of IgAN. By signing up and contributing to research, you can aid in the development of new treatment options and help researchers to better understand the disease. Best of all, you can participate from home and receive updates as they become available.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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