Resources & Articles

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?

A kidney transplant is a surgical procedure where a healthy kidney is placed into a patient whose kidneys no longer function properly. The healthy kidney comes from either a living or deceased donor. End-stage renal disease occurs when a patient’s kidneys lose the ability to filter fluid and waste from the body, leaving harmful levels of waste behind.

IgA nephropathy (IgAN) is a kidney disease that can cause inflammation and damage to the kidneys due to the deposition of the immunoglobulin A (IgA) protein in the tiny filters in the kidneys, called ‘glomeruli’, which can lead to kidney dysfunction. The diagnostic process for IgAN usually involves a combination of tests to evaluate kidney function and determine the extent of damage.

The COVID-19 pandemic has had a significant impact on the lives of millions of people worldwide, including those with chronic conditions such as IgAN. Although there is limited research on the effects of COVID-19 on people with IgAN, it is crucial to take precautions and seek medical attention if you experience symptoms.

IgA Nephropathy (IgAN), also known as Berger’s disease, is a rare kidney disease that can cause issues with the kidneys’ ability to filter waste from the bloodstream. IgAN occurs when a compound called immunoglobulin A (IgA) builds up in excess within the kidneys, resulting in inflamed tissue and other complications. Thanks to modern treatment methods, IgAN can be effectively managed and its prognosis significantly improved. However, if left untreated, IgAN can lead to serious health problems, underscoring the importance of timely diagnosis and treatment.

IgA nephropathy, also known as IgAN or Berger’s disease is a type of kidney disease that occurs when there is an excess build-up of immunoglobulin-A (IgA) within the kidneys. If left untreated, this can cause inflammation of the kidneys and other complications that reduce the kidneys’ ability to efficiently filter waste products from the bloodstream.

IgAN, or IgA nephropathy, is a chronic kidney disease affecting millions worldwide. Despite its prevalence, many patients struggle to understand the symptoms of IgAN and how to manage the condition effectively. ‍This is a problem that the team at PicnicHealth is working hard to solve. Founded by Noga Leviner in 2014, PicnicHealth was created by a fellow patient to empower others to take complete ownership of their health records and manage their conditions confidently. In this guide, we will explore the symptoms of IgAN, also known as Berger’s Disease, and provide helpful tips for managing the condition.

Sometimes, my experience with IBM leaves me feeling amazed at how hard it is to figure everything out.

It’s important us PA parents keep using our voices to push for more research.

Our world had turned upside down, our ground had shifted below us, and we were trying to grasp at anything to hold on to.

At the heart of genetic counseling is empowering patients and families with knowledge of genetic disease and being a supportive pillar as they navigate their journeys.

2022 was the biggest and most exciting year yet for PicnicHealth - not only for our team, but for our Change Champions, PicnicHealth users, and research partners. We want to thank everyone for being a part of this incredible community and making this past year possible. Before we jump into 2023, join us as we look back at our favorite moments of last year. We raised $60 million in Series C funding! PicnicHealth is ecstatic to have raised a $60m Series C to help build deep, complete, and clinically-rich real-world datasets in several new diseases. The team spent the year growing our research program portfolio, connecting with new patient populations to initiate new studies; introducing new capabilities to our patient app to make it easier for patients to tell us more about their experiences by completing surveys, diaries, and more; and building new data features to help researchers gain new insights faster.

As a bleeding disorder, Hemophilia has the potential to create some serious problems for the patients that live with it every single day. Without the ability to properly clot your blood, it can be difficult to take many risks that could lead to excessive bleeding. Plus, this bleeding can occur internally at just about any time. This can significantly lower the patient’s overall quality of life, but there is a chance that it doesn’t have to be that way.

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A diagnosis of Alzheimer’s disease or dementia for your loved one can be overwhelming. There’s a lot to think about, from medical care to emotional support, from daily logistics to planning for the future. Staying organized with paperwork may seem minor, but for caregivers, it can make everything you’re dealing with a lot more manageable.

Alzheimer's is the most common form of Dementia and is characterized by how it impacts a human's behavior, thinking, and most importantly, memory. The symptoms can worsen over time, and the patient may have difficulty carrying out daily activities. Memory lapses, or mild memory loss, are usually one of the first signs of Alzheimer's disease and symptoms continue to worsen over time, although the rate at which the disease progresses can vary.

Alzheimer’s disease is the world’s most common form of dementia, affecting more than five million Americans over the age of 65, and approximately 200,000 Americans under 65 who are diagnosed with early-onset Alzheimer’s disease. It is characterized by problems with memory, thinking, and behavior. If you or someone you care for has been diagnosed with Alzheimer’s, it’s important to learn about the disease and it’s different stages so that you can get the right treatment and support.

Managing an Alzheimer's diagnosis, whether it's yours or that of a loved one, can feel incredibly overwhelming, isolating, and just plain difficult. These five content creators share their real experiences, tips, and resources with Alzheimer's.

Caring for a loved one diagnosed with Alzheimer's can be overwhelming. However, in-home care can provide patients with a safe and comfortable environment and allow them to retain some degree of independence.

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At the 38th Congress of the European Committee for Treatment and Research in Multiple Sclerosis PicnicHealth data was featured in two posters presented by our research partners. Continue reading below for more information on how your contribution is supporting leading Multiple Sclerosis researchers.

PicnicHealth Gives Back has returned for another year! Every time a patient contributes to a PicnicHealth research study, PicnicHealth will donate to a patient advocacy group until December 31, 2022.

November 24th, 2022 is National Family Health History Day (also known as National Family History Day) — a day to raise awareness of familial health.

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PicnicHealth, a patient-centered health technology company, and Bristol Myers Squibb are working together to leverage real-world evidence to study symptomatic obstructive hypertrophic cardiomyopathy patients within the DISCOVER-HCM Registry.

I am just trying to be as honest as possible... Growing up having this disease has been pretty rough.

Being born with a disability that has evolved or progressed in my lifetime, I’ve had to adapt to every moment.

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Alzheimer's disease is a progressive, degenerative brain disorder that causes problems with memory, thinking, and behavior. The earliest symptoms of Alzheimer's usually begin to appear in people in their late 30s or early 40s, but because they are often mistaken for other health conditions, they may not be noticed. As the disease progresses, it becomes increasingly difficult to diagnose and treat accurately.

Five years into her mother, Linda’s, mixed dementia diagnosis, Patti LaFleur made the decision to have her mother move in with her and stepped into the full-time caregiver role. A former kindergarten teacher, Patti had no prior experience as a caregiver. What she did have, however, was love and gratitude for her mother and the confidence that they would figure things out together.Patti’s raw and honest account of caring for her mother has inspired the caregiving community on social media. In addition to care tips, she’s shared her mom’s infectious laughter, their beautiful partnership, and how they’ve overcome obstacles. We sat down with Patti to learn more about her caregiving journey and the insights she has gained.

Maria Montessori is famous for revolutionizing child development and education, but people of all ages can benefit from the Montessori approach, especially when learning new things. Applying Montessori principles to Dementia Care doesn’t infantilize people living with Dementia. Similarly to children, it empowers them to be independent and creative. For people living with Dementia, each day is an opportunity to rebuild, discover, and learn, and it’s on us to support them. If we embrace this growth mindset, imagine the possibilities.

Alzheimer's disease is a progressive, degenerative brain disorder that causes problems with memory, thinking, and behavior. The earliest symptoms of Alzheimer's usually begin to appear in people in their late 30s or early 40s, but because they are often mistaken for other health conditions, they may not be noticed. As the disease progresses, it becomes increasingly difficult to diagnose and treat accurately.

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I believe that advocates are quintessential parts of the ecosystem for change because they inform lawmakers and health leaders of outdated policies and healthcare priorities.

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Dr. Kimberly Chapman of Children’s National Medical Center sat down with AllStripes to discuss how she became an expert in MMA and PA and how de-identified data from medical records and the JUMP study will contribute to the MMA and PA research landscape.

You have to do what you can while you can because in the future it’s going to be more difficult.

The artist Bukky Adeyokunnu explains their photography’s relationship to living with sickle cell, in two videos set 9 years apart.

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Read the results of our Distance to Care survey for patients with lysosomal storage disorders.

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Living with a rare disease brings you to a doctor’s office more than the average person. To make the most of your time with your doctor, it is important to be prepared, listen, and speak up in order to build rapport with them. Here are my five tips to help you do this and improve your next doctor’s visit:Take notes. When talking to a doctor, it is easy to nod and agree with everything they are saying. It may all make sense at that moment, but the second you leave the office, so much information is forgotten. Taking notes on your phone or in a notebook helps ensure you have all the information to look back on if you forget what is discussed.Organize and keep track of your medical records. Having your records and imaging readily available, especially if you are seeing a new doctor, is extremely helpful not only for the doctor, but also yourself. Doctors will want to review your history, but you yourself may want to review your records to mark down how you physically feel and compare them to the actual testing. Programs like PicnicHealth’s Timeline make it easy to integrate your medical records between all your doctors (PNH-related or not), hospital visits, lab work, etc., and keep them readily available in one place.Keep a running list of questions between appointments. Whenever a question pops into your head, write it down! Bring that list to your appointment in whatever form is easiest for you; write them out, keep them stored on your phone, or even print them out so you can write the answers next to each question as you ask your doctor. Listen to your doctor, but remember you do not have to be a silent participant. Try to make sure appointments feel like a discussion rather than a one-sided lecture. Don’t forget, it’s your health, and no one knows your story better than you do.Stay informed. You are your best advocate, staying informed about PNH news is a great way to understand the disease and any opportunities you might have for new treatments. There are also low-effort ways to participate in PNH research with observational research studies. PicnicHealth is a great platform for both understanding your medical history and contributing to observational research.Don’t be intimated. Your doctor may have extensive education and multiple degrees, but don’t be nervous around them, they are humans too, and are there to help you. The more relaxed you are, the easier it is to open up and give them the information they need to give you the best care.

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Read the results of our COVID-19 healthcare impact survey.