Thank you for your response and even more for your concern. Selah’s rash was confirmed as being Fifth Disease rash. Arthritis is an auto immune disorder according to her neurologist and rheumatologist so she has two autoimmune disorders: arthritis from the fifth and GBS. With hope mentioned something abou that dermamyositis and I will like at it again. Selah is ok with doing it the hard way, unfortunately. I called the Foundation and they said something about Dr. John Dalakys in Atlanta, Ga. They said he is willing to consult on any case for free if your physician calls him. Are you happy with your doctor? How did this all come about for Emily? Selah’s physician says that she is definitely in the minority as she definitely had a causal event or whatever as Fifth is a virus. He said he guesses she kind of falls under the CIDP unbrella now since it has been 4 months. He is not hung up on labels.
In my experience, the most important factor is that I understand that those who have never experienced CIDP or GBS, either as a patient, caregiver or family member, really have no idea what it is about. First-hand experience is all that counts when it comes to knowing how it feels physically, how the individual feels, what they fear and their hopes for recovery. To have something as devastating as a disorder that comes, in the case of GBS, so quickly, and affects every part of you – as opposed to a gall bladder problem, say, that only affects that organ – cannot possible be comprehended by others. That means all they can do is be willing to accept what you tell about what you are going through. I worked in an “Independent Living Resource Centre (ILRC),” an organization started by people with disabilities who were tired of being told what to do by medical staff and others that thought they knew what was best. My work reinforced for me the whole idea of the validity of the individual’s story and the fact that each one is unique.
Because I had GBS, I feel lacking in knowledge about CIDP. In our support group, those with CIDP don’t come for very long and I wonder if it is because we don’t discuss it as often or in the same way when most of us dealt with GBS. As a result of this, we are starting a CIDP group in the fall so that they can benefit the way we have by sharing thoughts, solutions, frustrations and funny stories.
Have a great day! Maureen