2018-June-2
We had a semi-normal support meeting. As we usually try to do, we went around the room and folks shared their ideas, experiences and frustrations. Peter endorsed his inexpensive TENS machine. But first, everyone wrote a personal letter to the Washington Post in support of our campaign for a PN “Awareness Article”. We put a bunch in the mail.  [Update: a week later the Post printed the article. Cause & effect?]

Then we had a discussion with Carol Brooks, a genetics specialist coordinating patient education for a company testing a treatment for a rare genetic version of amyloidosis. Update: 8/24/18 – FDA has approved use of the treatment.

• There are many types of amyloidosis. Each one causes the byproducts of the immune system (amyloid) to be incompletely broken down so they accumulate in bad places. In the brain it is implicated in Alzheimer’s. But they also accumulate in and around peripheral nerves – in other words it can cause PN. The rare kind Carol’s company is fighting almost always causes neuropathy, frequently PN. 
  
• Carol works with support groups as part of her job, was in town for a conference and offered to come by and talk about genetic diseases, the diagnosis challenges of amyloidosis (especially rare ones) and about working with support groups and caregivers when dealing with participation in clinical trials. 
  

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Their website echos data from The Alliance for Caregivers that has interesting statistics on caregivers (especially for rare conditions):
– 67% say providing care is emotionally stressful
– 22% use respite services- 53% report feeling alone [That’s what our support group is designed to fight!]
– 41% report fair or poor emotional state.
– 89% find they must educate health care professionals about aspects of the disease [it’s not surprising that it is this high for really rare diseases. PN is not rare – but we routinely find that health care folks know little about it.]
– 59% have exhausted their personal savings [again, higher for really rare diseases. But, again, there is little that normal medical care can do for PN, so people tend to keep spending funds to find some relief]
– 29% [only 29%?!] have plans in place for the patient’s future care
– 59% of patients receive help from at least one other unpaid caregiver
– 24% of patients report unpaid care from at least one youth under age 18 [this is probably lower for most PN patients, who are older]