I am having a hard time finding people who have responded to comments I have posted. I def want to help anyone (adult or pediatric) with aHUS. You can always email me directly at email@example.com
Not sure why I can't find them on here?
Help me if you know how I can locate them on this site.
As an observer from the UK I shall comment on why you may feel like this. The Foundation site is built on lots of people sharing their experiences and supporting. Generally parents are much more likley to share than adults do. But there are cultural differences, in the UK, parents would be reticient to say anything about their child on a website but in the USA it is much less so.
We set up a forum on the UK aHUS websitefor people to use but little has been shared on it for 8 months!! That is why we prefer to use the Foundation's site to share information with others.
Paradoxically when aHUS patients meet up face to face there is much more sharing and supporting going on , as people seek to learn from others and pass on what they have experienced. This usually continues in an informal way by some people, long after meeting, which is great!
The Foundation appears to be in the process of sectorising its activities into Regions so that more regular face to face meetings are possible which would present an ideal opportunity for you to engage and support others in whatever part of the States you live.
That can be built on at aHUS national conferences when ever they are held and through the pages of this website or their Facebook presence.
Thanks Len! It could be me too!!! Ha!
Just want to help anyone dealing with this disease. Sorry the UK site hasn't been used for 8 months! We all def need support and encouragement from each other.
The UK website www.ahusuk.org is well used, and aHUSUK members are also in informal contact with each other .
Some have also worked together to make an application to our Health Service for eculizumab to be made available free of charge to all patients who need it in England. They also attend meetings about aHUS and talk to and support each other. But are less likely to participate in internet forums about health matters and so it is the forum that is little used.
The other forum on this site with the same title as this seems to be taking off though, which is encouraging.
When I was first diagnosed I went on a strict diet. I could not have more than 1200 mg of salt a day. It's been over a year now and I've found that staying on a low salt diet does help. Less water retention and feeling better over all. It does get difficult, especially when you go to parties and sometimes have to call ahead of time to know what they are having. You're right though, about people that don't understand. Since aHUS is so rare, people don't know anything about it, which is understandable. You can tell them about it, but if they're not in the loop of people that were there for you every step of the way it's hard for them to understand. If you want to talk, e-mail me! :-)
yael ripstein said:
Hi I am a 39 yr old female who was diagnosed w aHuS 3 yrs ago and my life has totally changed since then
I would love to discuss and share about my experience as it is difficult to explain to friends who are healthy and just don't get it
Have you gone on a renal diet someone brought that up to me but I don't know if it will help
Let me know your thoughts about it plsr
My daughter is on low sodium (no more than 1600mg) low phosphorus diet. We also had to watch potassium when she first got home from hospital. I googled renal diet and printed out a lot of charts and followed the doctors orders as best I could. My dd also has multiple food allergies and GERD, had pancreatitis at that point and it was a challenge. All the doctors instructions contradict each other about what she should/could eat. We weighed, measured and wrote down everything. Learned what foods were high in phosphorus, potassium, sodium. Had a chart on pantry door as a reference for frequently eaten foods, etc.
Regarding parties: Since she's always had food allergies people were used to her having a special diet, asking about food served and us bringing her own stuff to have so for us not much really changed in that regard. We usually always have something "safe" for her to eat with us.
Now we just use general numbers so she can manage herself. She gets 6oz of protein a day, one serving can be dairy but need to be careful how much and she has tried to learn what foods to avoid due to high sodium content . She feels better if she follows the diet, just like she feels better when she avoids all the allergens and eats low fat.
Even doctors we see, like allergist, pediatrician, etc don't seem to get aHUS, they think she had ecloli and is all better now. I don't think aHUS is on their radar.
I agree about aHUS not being on other doctor's radars. If I even get a sinus infection, which is pretty common b/c I have a deviated septem in my nose, my regular doctor doesn't want to treat me. I get told to go to my hematologist. Granted, I did freak my regular doctor out b/c he was the one that sent me to the hospital when I first got aHUS. So, he saw how bad I was right from the beginning and really doesn't want to see me like that again. So it's pretty much a double edged sword. You don't want to be the person who cries wolf, but you also don't want to have a major health problem again.
I was diagnosed with aHUS almost a year ago. The doctors started me on Soliris right away. I've been stable now for several months. I have had a lot of issues with my diet though. My phosphorus and potassium are both low. I've tried to eat high phosphorus and high potassium foods, but my numbers don't go anywhere.
I just got back the results from my genetic testing. I have an abnorality in the gene that controls the Complement Factor I. The doctor at the Mayo clinic recommends that I stay on Soliris indefinitely, and have a possible combo liver and kidney transplant. I meet with the transplant team in Spokane the first week of March. They don't have this report yet, so I'm not sure what will happen with a transplant now.
I had to quit my job and I was going back to college, but had to quit that too. I'm tired most of the time, but my 3 kids make me push on. My husband has been so much help and has been great through all of this. I pretty much hang out at home now and don't do much.
Oh to top it all off, I had a kidney stone this past weekend. That was horrible, I definitely don't recommend it to anyone!
Here's my email if anyone wants to email me. I don't get on this site very often. firstname.lastname@example.org