The rare disease community has lost a tireless and utterly dedicated advocate – Jennifer C. Jaff, Esq.  Jennifer was an attorney who, as a result of her own nearly 40-year battle with a chronic disease, became a leading advocate for people with chronic illnesses. When she died in September, the New York Times published an obituary that chronicled her impact and her dedication.

I knew Jennifer, and I had several occasions to refer patients to her.  But I need to digress here…sort of…

The last few weeks have been a wild and miserable season of weather extremes for those of us living along the northeast coast, and the NORD offices in Danbury, CT, have  experienced just about all of it.

In September, after several days of heavy rain, we endured sudden flooding of almost biblical proportion in our Danbury, CT, office. It took down our electricity, Internet capability, and phone system for days. This was followed just a few weeks later by Hurricane Sandy, with many of us having no electricity, heat, or hot water in our own homes for a full week.  Then winter storm Athena hit us shortly afterward, leaving the roads a slippery sheet of wet snow and sleet, with some of us once again losing power at home.

We were, in our own way, disabled.  We had lost our power.

Having endured those seven electricity-deprived days and nights in my own home, everything – the most minor activity such as going from one room to another once the sun went down – took major planning.

“Where did I leave the flashlight?”

“Do we have anymore AA batteries for the radio?”

“Where did I leave my head lamp (camping gear that I purchased from LL Bean, specifically in preparation for the hurricane) — I can’t read without it and will go crazy just sitting here!

“Our cell phones aren’t working now – how can we call for help if we need it?”

I found myself banging into things because I couldn’t see them in the dark. I experienced several false starts, having forgotten to pick up the flashlight as I got up from the couch, put the matches back in the same spot so that I could find them to light a candle, or bring some water with me into the bathroom in a pitiful attempt to wash up.

Our son in Florida tried consoling us by calling (when our cell phones actually worked) and reminding me that “things could be worse, Mom.”

This statement, meant to be calming and helpful, only served to make me more frustrated and very, very irritable. Why?  Has that statement ever thoroughly aggravated any of you (despite being said with the best of intentions)?

The truth is, of course, that my son was absolutely correct – things could have been MUCH worse. I could have been wheelchair-bound, or required tube feedings, or IV nutrition, or had a child who required special, daily bandage changes, or been facing any of the myriad and daily miseries that many people with rare diseases endure each day. Disability, whether due to a rare disease or a common one – drains one of his/her strength and dignity.

Disabled people within the rare disease community have a uniquely difficult situation. Many fight an eternally uphill battle trying to contend with recalcitrant insurance companies, or grapple the bureaucratic maze that our social security system can present, just to obtain the most basic disability assistance.

Returning to Jennifer Jaff …

Jennifer was the was the Founder and Executive Director of the non-profit organization, Advocacy for Patients with Chronic Illness, Inc. The organization’s mission is, “…to provide free legal information, advice and advocacy services to patients with chronic diseases…” They never charged a fee, regardless of a patient’s ability to pay. And without question, Jennifer C. Jaff was THE EXPERT on chronic illness and advocacy. She learned it all the hard way, through personal experience.

Jennifer was diagnosed with Crohn’s disease at the age of 19. Crohn’s disease is an incurable autoimmune disorder that inflames the intestines and causes severe abdominal pain, diarrhea, and GI bleeding. Jennifer underwent eight operations and required, during a particular 12-year-period, steroids that caused her to gain 120 pounds.

During a period of remission, Jennifer went to law school and became a trial lawyer, serving as an assistant state attorney in CT. She then developed a private law practice, representing chronically ill clients. Then, when her own condition worsened, she founded Advocacy for Patients, raised funds through the sale of her outstanding disability handbook, and provided free counseling to clients.  She was constantly in demand for speaking engagements on issues related to health care insurance issues and the Affordable Care Act.

Jennifer was a delight to speak with!  I will forever count myself among the fortunate to have communicated with Jennifer, and more than anything, to have been able to refer our rare disease patients to this entirely trustworthy and most knowledgeable human being for the best advice available. And it was all free!

Despite suffering miserably from a disease that incapacitated her for extended periods, and that ultimately and without warning took her life at age 55, on September 14, 2012, Jennifer never lost her personal power.  NORD deeply mourns her passing.

How do you maintain your power?