Patients with a diagnosis like Alport syndrome often feel helpless to impact the outcome of their own health. While there are some things patients cannot change, there are many things they can influence.
This is Part 2 of a 2-part series of articles from Professor Oliver Gross. In Part 1 of this series, Professor Gross shared his experience diagnosing Alport syndrome in a young family. The parents had been told kidney failure and dialysis were inevitable for their young children. Professor Gross refused to accept that and has worked for 20 years to help change that outcome. He talked about what doctors can do to help diagnose and treat patients earlier to get them on medication to prolong kidney function.
In Part 2, Professor Gross addresses what patients and patient organizations can do to help change their own outcomes:
If we assume Alport syndrome does not have to have an “inevitable destiny” of dialysis, then we must ask, “What can everyone do about it?”—everyone meaning patients and parents. Below are several actions that you can take now:
1) Take care of you.
Take care of your more vulnerable spongy filtration units in the kidneys. Do not overwhelm them.
b) Avoid high salt intake. (The National Kidney Foundation recommends no more than 2,000 mg/day)
c) Avoid gaining too much weight as extra weight is not good for your kidneys.
d) Avoid high animal protein intake, as well as protein bars and shakes. Eat healthy using a Mediterranean-style diet, which includes mostly plant-based fruits, vegetables, and whole grains, plus fish and poultry.
e) Avoid smoking.
f) Avoid pain medication (NSAIDs). This is especially important for patients with kidney disease.
g) Avoid recurrent bacterial infections. Infections should be treated with antibiotics.
h) Avoid poor dental health as studies have shown a connection between kidney disease and poor dental care.
i) Do NOT avoid exercise, but do not overdo it. However, do avoid heavy weight exercises to solely build up muscles, such as bench presses. Low weights and high repetitions are recommended.
2) Help other Alport families. Share your experiences with them. They will help you and you will help them.
3) Take care of your other family members. If everyone in your family has a healthy lifestyle, you do better.
4) Educate your doctor. Teach him and help him not to accept an “inevitable destiny” for Alport syndrome. Help him to make the next diagnosis in the next Alport family earlier and better so they can begin treatment sooner.
6) Raise political awareness. You have the right to demand early diagnosis for a treatable disease.
7) Raise hope. Raise hope, especially in families with young, newly-diagnosed children. Our experience with the EARLY PRO-TECT Alport trial shows that a very early diagnosis in a very young, yet very healthy child causes a tremendous struggle for the young families that can hinder early therapy. You can raise hope and you can make the difference (not the doctor!).
It is important that this information about early diagnosis and treatment, and what patients can do reach families affected by Alport syndrome. Imagine if this message reaches 50% of the
Alport families in the developed countries. Would it make a difference? YES! We cannot calculate the positive effect on the quality of life, but the difference would be tremendous. We can estimate that these rather simple points would prevent 1 million years of dialysis and extend more than 1 million years of life in Alport patients. One million years!!
And then imagine if patient groups bring this message to ALL Alport families throughout the world. The work of Alport patient groups like ASF motivates us to do research in Alport syndrome. Keep on going! You help to make the difference.