ukadultitpregistry.com

[amanda]

I wonder if there was any support networks or information out there on how to manage Evans syndrome, and the effects it has on our family life? My husband and I both work, we have 3 children, and are finding increasingly difficult to balance everything. Our main concern is the unpredictability of the illness and the fear of the future ahead......
The main problem is living with the fatigue of the low haemoglobin levels, and the effect that this has on my abilty to run a family home and work. Sorry to sound like I am moaning, so far I've been very fortunate with the treatment I have received. Via the commitment of the haematology dept with the management of my illness. Any links for any support would be very helpful.

Regards
Amanda

[Ameet Sarpatwari]

Dear Amanda,

I hope all is well and apologise for the delay in responding to your query. First and foremost, please know that you are not moaning at all. Evans syndrome is a very rare disease (in fact it's incidence [number of new cases over a given time] and prevalence [number of people with the condition over a given time or at a point in time] is unknown). Much more research is needed to provide patients, family & friends, and caregivers information on the natural history of the disease and the effectiveness of treatments to manage it. We are hoping to collect such data through our Registry and will be conducting an analysis on what information we have collected to date later this year.

I am happy to provide you with some review literature on what is currently known about Evans syndrome. Please let me know if you would like a copy these articles, and I can follow-up with you via email; my schedule is a little harried this week owing to conference, but I should have ample time early next week to get these materials to you and to see if I can direct specific queries you may have.

I have also found what seems to be a new patient forum for Evans syndrome. http://www.evanssyndrome.net/index.php?option=com_frontpage&Itemid=1. I should warn you that I haven't yet had an opportunity to fully explore the site, but it looks promising.

I hope that this information helps. Do take care and let us know how you and your family are faring.

Sincerely,
Ameet

[amanda]

Many thanks Ameet,

the link was very useful, it's very reassuring to be able to speak to others going through similar issues, and to receive support. Any information you may have on Evans Syndrome would be much appreciated.
i appreciate that very little is still known about the illness, but it is very heartening to hear further research is being carried out.
As a layman of all things scienticfic and medical, i am finding it a positive thing to learn about the basics of the immune system and how it works( or not in my case!), so any info would be very useful.

Kind Regards

Amanda