Anti Factor H Antibodies

[Michele Haymes]

Hi Everyone,  I'm a new member in the group - my 5 year old son Jeremy was diagnosed with aHUS in September last year.  In January we were told that his condition had been narrowed down to Anti FH ab. 

Jeremy is now down to fortnightly Plasma Exchange coupled with immunosuppressants.  I'm keen to hear from anyone who also has this specific condition and learn about how they are being treated, any recurrent events etc. 

[Svetlana Finley]

Thanks for update!!! Glad to hear he finally get to swim and play sports. I think that is most awesome feeling for our kids ans us, when they are free from their lines. With Anna we started Soliris, then we will redo her antibodies results in 6-12mo. 

Svetlana

Michele Haymes said:

Hi Everyone! I wanted to give an update on Jeremy. Last week we finally got the perma cath removed from his chest!!! It was almost 8 months to the day that it was put in. We are all so very exited for him and he is very much looking forward to going swimming, kicking a football and having playful wrestles with his friends. Things we took for granted before he was diagnosed with aHUS.

The decision to take it out was made a little easier as it became clotted in both lumens, but it hadn't been used for Plasma Exchange since the beginning of February. It is a real relief. The immunosuppressants are working well at maintaining excellent blood results. Since ceasing plasma exchange and commencing the meds, his blood work has been really good.

In April we sent a second batch of blood to a testing a lab in France. The results showed that his antibodies are higher than the December results, which was disappointing, but he looks and feels well, plus is routine blood work is good so we are trying not to focus on the France data at the moment.

Look forward to reading all your stories too.

Cheers,
Michele