Founded in 1992, the IgA Nephropathy Support Network is a non-profit organization that serves as a clearinghouse for information on IgA Nephropathy (IgAN), a disorder of the immune system affecting the kidneys and slowly destroying them in nearly 50% of the cases.

Over the years the Network has linked patients with IgAN in different communities, sought to stimulate interest in this disorder among health professionals, and lobbied for research into IgAN. In 1993-94, we were successful in securing $2,000,000 from the National Institute of Diabetes, Digestive, and Kidney Diseases for about a dozen research proposals in IgA Nephropathy. None of this would have been possible without the strong support of our membership.

Now, because the number of calls we receive has grown beyond our capacity to handle them, we are have developed this informational website.

In the fifteen-plus years since the Network was established, we have spoken to hundreds of people who have IgAN or whose children have IgAN. Here are some of the conclusions that, sadly, we've drawn:

1) Far too many people with IgAN still have a long and difficult time getting a diagnosis. Often they go for years — and through many expensive urological tests — before being diagnosed correctly.

2) More people would be diagnosed early and with less hassle if the simple dipstick urinary screening were made a routine part of every physical examination, for children as well as adults. Unfortunately, it is not. Unless there is visible blood in the urine, the disease can go unnoticed for years.

3) There is no cure for IgA Nephropathy in orthodox medicine. Despite the introduction of relatively benign treatments, such as fish oil and ACE inhibitors, the trend continues to treat using immuno-suppressive drugs such as prednisone or Cytoxan, a chemotherapeutic agent. Judging from complaints we have received over the years, doctors do not always fully disclose the potential side effects of drugs or procedures they propose. Without full disclosure, there is no informed consent on the part of patients or their parents. Patients need to know the risks of biopsy (including the risk that inadequate tissue samples will require a repeat biopsy), and parents need to know that powerful drugs such as Cytoxan can cause long-term nerve damage and sterility.

4) In early or mild cases of IgAN, nephrologists usually want to watch and wait to see what course the disease takes before recommending a specific treatment. This is responsible and proper practice on the part of the physician. Unfortunately, it tends to drive patients crazy and boost their anxiety levels. For those who want to be proactive in managing their IgAN, we suggest a few things you can do to help yourselves:

• Patients with moderate to heavy proteinuria, especially those who have suffered some loss of kidney function, should consider eliminating meat and milk products from their diet. Basically, this means becoming a vegetarian, basing the diet upon fresh fruits and vegetables, whole grains, and such vegetable sources of protein as soy (fish occasionally is fine), while avoiding processed or fast foods. (Those in the later stages of kidney disease, specifically chronic renal failure, must follow different dietary guidelines that include restrictions on potassium.) Taking anti-oxidants (vitamin C and vitamin E, pycnogenol or grapeseed extract, or a good antioxidant formula) can be very helpful in reducing adverse effects of inflammation in the kidneys.

• If your doctor has prescribed fish oil, you might wish to consider using flaxseed oil or perilla oil as alternatives. From vegetable sources, these oils are free of heavy metal or dioxin contamination that may be present in fish or cod liver oil. Both are high in EPA and both are more easily tolerated than fish oil, although you may need to take more of them to acquire the same concentrations of EPA and DHA. Drinking distilled water rather than tap or even bottled spring water may be advisable, particularly if you have any doubts about the safety of your water supply. If you should have a problem with headaches, as some IgAN patients do, it is important to avoid taking painkillers that contain acetaminophen (Tylenol, etc.) or ibuprofen (Motrin, etc.). See our guidelines on coping with headaches without resorting to analgesics toxic to the kidneys.

• When you're dealing with a relative rare "orphan disease" like IgAN, it's easy to feel isolated and fearful because you rarely know anyone else who has the disorder. Talking with someone who's been there can help. If your nephrologist has other patients with IgA Nephropathy, he or she may be willing to put you in contact with them, provided you are willing to sign a waiver of confidentiality that allows the doctor to do this. There are also chat rooms regarding IgAN.

• If you are open to alternative or complementary medicine, by all means consider seeking help there. Homeopathy. naturopathy, acupuncture, and other therapeutic modalities may provide symptomatic relief from such problems as headaches or flank pain, without the side effects of drugs. IgA Nephropathy has even been cured by homeopathy, although achieving a cure requires time and great skill on the part of the homeopathic practitioner. Most homeopaths will not have had experience treating IgAN, owing to its rarity, but any homeopath with a good track recording in treating immunologically-mediated diseases such as rheumatoid arthritis or chronic fatigue syndrome should have the necessary skills to help with IgAN.