We have started a support group for adult patients and parents of children with nephrotic syndrome at the Panera Bread, 6300 Lantana Road, Lake Worth, FL 33463. We meet the first Wednesday of each month from 7 - 8 p.m.
NephSpace – Nephrotic Syndrome & FSGS Support Group
The NehpSpace Support Community connects patients, families, friends and caregivers for support and inspiration...
More about NephSpace >>.
More about NephSpace >>.
New reply 8:50 de la mañana
New reply 9:43 de la mañana
Believe me, we know what agony it is to have a diagnosis of FSGS, to go to many doctors, to have biopsies, be admitted for illness, to try meds. We know. But I want to give some positive feedback and encouragement to all of the posters who post their...
New reply 9:25 de la tarde
I'm looking for NS patients that have gone into remission and have not had any relapses...are there any here on this site? If so, please offer up some advice and or experiences you've had with NS. What is your life like now without NS and how have you...
New reply 4:42 de la tarde
Has anyone else come off of ACTHAR? I completed a six month stent and decreased from two times a week to one time per week recently. I am starting to feel almost myself, but I am more weak and fatigued one to two days before the next injection. I have...
New reply 12:47 de la tarde
Dear All, I wanted to ask a question which is repeated and asked by most of the parents to treat their kids. Though we have a good pediatric nephrologist now, we would like to explore someone who particularly expert in treating MCD / FSGS. Though this...
New reply 7:31 de la mañana
What a week! I am now a zombie! They have me on a pain pill for my Acthar headaches. At least the pain is less and I am A LOT less angry.The Doc is not happy with my blood tests.So back I go in 2 weeks for more tests.
New reply 1:21 de la tarde
My son is 14 and has had this disease since he was two. He is currently on a combination of steroids and tacrolimus. We have been unable to wean him from the steroids successfully for some time now. It has been suggested by his doctors that we...
New reply 7:45 de la tarde
Saw Nephrologist he was supportive,I am doing well, good BUN, creatinine and GFR. Still spilling protein less than 1 on 24 hour urine and 3+ for my afternoon, which is typical. My OB is very doom and gloom, been crying since my appt yesterday. I've...
There are two remaining NephCure Foundation patient educational seminars for 2013. Los Angeles on 12/8/2013 and Philadelphia on 12/7/2013. Please join us as we hear from various experts in the field of Nephrology speak about Adult, Pediatric, Nutrition,...
Hi everyone, I was wondering if anyone substitutes the traditional Turkey fare and delicious sides for healthier alternatives. We are in charge of sides, and one family member has a gluten allergy. I have another three family members on diets. I...
- 1 of 66