On-line MPN Patient Support
I’m alive, enjoying every minute because of Joyce. What more is there to say? — Marty Prager
by Zhenya Senyak
WE COULD NOT HAVE GOTTEN OFF TO A WORSE START. Shortly after I got my ET diagnosis I found Joyce Niblack’s MPD-NET support List. A week or so later, someone posted notice of a holiday sale she was having. The Internet was still largely non-commercial back then and I imagine I was in an early stage of MPD despair. I posted my objection to anyone selling stuff on a patient support site. Joyce’s response was instant and ferocious. After chewing me out publicly she said I would be moderated, I left MPD-NET.
It was more than a decade before I returned to List participation. By that time, I had MF… and Joyce was gone. Only in the course of sorting out this history of on-line MPN patient support did I actually meet Joyce, through documents, stories, and remembrances. And only then.looking back across the gulf of years, did I recognize how hard and well she fought, how difficult the struggle and how great the prize she won for us all.. Joyce Niblack was in the MPD front lines for more than 20 years She was relentless in research and in promoting her gospel of treatment and education. She stormed the MPN world. Always suffering from one or more myeloproliferative diseases, she was a one-woman taskforce organizing conferences, publishing papers, advising patients (and doctors), raising funds, creating foundations, newsletters and e-mail groups.
But she wasn’t always Joyce Niblack.
She was once someone else and we might as well open her story when she never even heard of these rare myeloproliferative blood diseases..
Start with an employment interview.in Chicago, 1970, Nixon is President, the war in Vietnam is still inciting local demonstrations, women’s lib is launched, four students are killed at Kent State by Ohio National Guardsmen.
The young and pretty, dark-haired woman sitting across the desk is clearly a Midwesterner. She’s composed, plain spoken, direct. She isn’t nearly as nervous as a job applicant should be, even a professional. She sits across from her prospective boss, composed, her eyes questioning him, almost as if to ask whether he qualified..
“I was Patent Counsel of Abbot Labs, North of Chicago,” said Bob Niblack, and Joyce she was looking for a job outside of Indianapolis. She was a patent attorney with Eli Lilly. We hired her and found out at a very early time that she was used to being the smartest person in the room. She was a very high performer She got into technology and was good at it, didn’t fake it. She didn’t play PhD biochemist. She would really learn this stuff.”
Four years later she would become Joyce Niblack…but she still had not yet morphed into the caped crusader we came to know over the years. She was still a patent attorney specializing in intellectual property. Bob retired from Abbott Labs in 1983 and as Niblack and Niblack, they cut out a respectable turf for themselves as intellectual property attorneys eventually representing two Nobel Prize winners and several Fortune 500 firms.
We probably never would have heard more of the former Joyce Ruth Krei if she hadn’t begun to suffer a variety of painful and debilitating events – a mild stroke, inexplicably high white blood cell counts, crushing fatigue, burning, numbness. She was first diagnosed with essential thrombocythemia, later, witth polycythemia vera. In any event, she had a myeloproliferative disorder.
In mid-life, an emerging mission
Almost 50 years old, Joyce was recruited into the early stages of a battle that would become her life’s work. Over the next two decades, with religious fervor, she would work to alleviate MPN patient suffering and dispel the widespread ignorance of these diseases…
“When I was first diagnosed and living in Illinois,”she would write later, ” a young hematologist fresh out of a residency at Harvard Medical school said In simple terms, in these disorders, the bone marrow goes nuts, revs up and produces too much of what it’s supposed to produce and much of what it produces can be abnormal which can cause complications….; ““ Her platelets were at 980,000, her WBC’s 27,000 and her blood volume was elevated
The next giant step along her path.was meeting her guide and mentor. Joyce was put on hydroxyurea to bring her platelets down but after six months had to give it up . Her marrow was severely depressed. A friend in New York insisted she visit the mecca of MPNs, Harriet Gilbert’s house at 115 East 73rd Street.
It was the middle of June, 1989. Her diagnosis had been made almost a year earlier but after reading everything she could lay her hands on, she was not reassured. ” I gave myself a few good cases of the quivering quakes because the literature at that time was still talking about shortened life expectations..” She enrolled in an interferon clinical trial and began taking 3MU daily.
In October, 1989 Joyce flew to New York.
Harriet Gilbert’s Waiting Room
“That was a wild, crazy day, “recalled Joyce. “…the electricity went out in her building about 30 minutes after we arrived and we kept seeing a flashlight bobbing around the office. The wait was long but this was my first experience with the sharing that went on in her waiting room and it was marvelous We all started talking and my husband and I learned more about MPDs, treatment options, etc. than we had since I was diagnosed.”
The camaraderie in Harriet Gilbert’s waiting room was the literal model for the MPN patient support groups – on-line and off – that were to follow.” The concept of the MPD Patient Network and Support Group was born” wrote Harriet Gilbert,”out of my personal experience with MPD in the 36+ years of my professional life devoted to research and medical care of patients with these “orphan” diseases. I came to realize the value of the extra support afforded by sharing experiences with others confronted with similar problems…My waiting room became a forum for such interactions and I was able to observe their benefits first hand.”
Harriet Gilbert believed Joyce’s Interferon dosage was too low. When Joyce’s bone marrow biopsy showed signs of developing myelofibrosis, she dropped out of the trial and, consulting with Gilbert by phone and coordinating with her doctor in Illinois she upped her dosage to 5mu. For three years she had normal counts, (The detailed history of Joyce’s medication and responses is in the MPN-NET archives. Just search for “Joyce’s Story”);
Joyce’s transformation under Dr. Gilbert’s care was much more than an adjustment of an interferon prescription, It was a transformation of Joyce’ s life. Eventually, Joyce became a patient volunteer.
Where Dr. Harriet Gilbert was a compassionate hematologist with a scientific research bent and an extensive clinical practice, Joyce was a woman of action, a driven PV patient searching for a cure, a tightly organized patent attorney with strong opinions and an attitude. They made a dynamic duo.
One of the early developments of their collaboration was an off-line – that is printed, for mail and personal distribution – newsletter.for an MPD audience that scarcely existed. It was called MPD Voice.
The three lives of MPD Voice
The evolution of MPD Voice, like the patient-doctor conferences, and patient support e-mail lists shows just how closely Harriet and Joyce worked together and how the doctor’s initiatives – non-profit organizations, doctor-patient conferences, newsletters, research support — were carried forward by the attorney.
MPD Voice originally was a brief handbook of the myeloproliferative disorders, how they are distinguished, what they mean to the patient, how they are treated and various comfort issues.” Published by the MPD Research Center, Inc. – Harriet Gilbert’s non-profit foundation — it was offered free to patients who would send in their name and mailing address
That compilation of names would shortly become the nucleus of the early MPD-NET e-mail list.
MPD Voice had a fresh lease on life in the Spring of 2005 when Joyce’s CMPD Education Foundation published an on-line version in connection with the 2005 Patient Conference. That newsletter also announced the discovery of the JAK2 mutation and the accrual of 345 participants from MPD-NET in a Harvard study of blood and DNA samples.
” At our Spring Conference in Scottsdale, John Camoriano was introducing Joyce and said now they discovered JAK2 but we have JAK1, the Jewish American Queen, with us right here.” Robert Niblack
In the decade between the two issues of MPD Voice, Joyce had emerged as a major figure in MPN research and education. There were six issues of MPD Voice in all, publication interrupted by Joyce’s worsening illness and suspended in 2009..
The third life of Harriet Gilbert’s brain child – the use of the name granted by Joyce’s foundation — is on-going at Dr. Claire Harrison’s project at Guy’s and St. Thomas’ Hospital (http://www.mpdvoice.org.uk/)
It wasn’t an unbroken path
Scientific advances, internet access, and strong patient support structures build during the decade between the first two MPD Voices meant there was a lot less “of the quivering quakes” in the world when an MPN diagnosis was handed down. Still it wasn’t a smooth ride.
Shortly before devoting herself to this work, Joyce found herself part of the first on-line MPD patient support group, a list built by Robert Tollen and hosted on AOL early in 1994. Tollen had started sharing research via e-mails with a few other PV patients before Bulletin Board Lists became available. Once the AOL capability was made available to public service groups, he moved MPD-SUPPORT-L over to its new home and the now familiar once-a-day e-mail digest was born.. (His first group included Joyce, Alice Wahl and Jeremy Smith. Harriet Gilbert was a frequent and involved participant in the e-mail discussions.)
With two strong-willed, smart individuals so different in outlook, background, capabilities and objectives, it was inevitable there would be tension and on-line clashes. Joyce left MPD Support-L after a short time to strike out on her own.
The Birth of MPN Doctor-Patient Conventions
The 1998 MPD Doctor Patient Conference in San Diego had been on Dr. Harriet Gilbert’s back burner for some time,. With patient-volunteer Joyce on the scene, and with the participation of Mayo Clinic’s Ayalew Tefferi, it picked up steam. In 1998 the very first conference to bring together MPD patients and leading hematologists and clinical investigators opened in San Diego. A report on the conference appeared on the MPD Home Page, a product of Joyce’s new MPD-NET list. (www.acor.org/mpd/bak/meet.html.bak)
“I was astonished by the time she gave to answer so many of our questions. I believe she gave of her heart and her all to help each and every one of us, and I am forever grateful.” Marion Boese
MPN-NET and the MPD Research Foundation – Common Roots
MPD-NET, a list modeled after Tollen’s but hosted by ACOR (Association of On-line Cancer Resources http://acor.org/) began with a couple of hundred names, mostly patients from Gilbert’s MPD Support. It was a key element of Joyce’s outreach program but she was also active in educational programming and fund-raising. That last activity brought her back to Chicago where she met Bob Rosen, a retired real estate investor and newly diagnosed MPD patient. With others, in 2000, they organized the MPD Research Foundation to raise money for basic genetic research into the causes – and cures – of MPDs.
“I was always impressed by Joyce’s focus, persistence, and no nonsense determination to achieve her and our goal, of finding effective treatments for MPD…. In the history of medicine, only a few patients have made a significant impact in finding a cure for their maladyl” Ronald Weiner
Private enterprise and public disagreement
Stephanie Miltz, a patient of Dr. Gilbert, was diagnosed with essential thrombocythemia at age 16. The story of this very young patient and the energy and organizational power of her mother, Celia, and a circle of friends and volunteers, created the opportunity to raise some money to fund research into ET. Celia formed Friends of ET, and working with the only charitable MPD foundation at the time, Harriet Gilbert’s MPD Research Center, organized a series of golf tournaments that yielded $75,000 in donations. (To date, Friends of ET has delivered over $630,000 in research grants.)
Joyce set up an MPD Foundation meeting between Celia and Bob Rosen which went well but rather than distribute the grant through the newly formed Foundation, Celia and Harriet Gilbert elected to make the grant directly to Josef Prchal via the MPD Research Center c/o Friends of ET. (Prchal, who would also receive a $100,000 research grant from the Foundation that year, was one of the few biogeneticists working in the MPDs in 2000.)
December 30, 2000 Celia posted a report to the MPD-NET List on the success of the fund raiser.
December 31,2000 Joyce responded by publicly chiding Celia – occasionally in accusatory terms — for not providing that grant through the Foundation.
Fireworks for the New Year!
Joyce’s reasoning was, by working together, we might provide massive grants that would make a difference but by making relatively small grants we weren’t likely to achieve much. The argument – united we can make a difference – has weight but the tone and platform she chose to make that argument further divided the MPD community.
Joyce always had her eyes fixed on the prize, finding the cause and cure of MPDs and spreading the word on to the MPD community. To that end, Joyce maintained, single-handed for several years, the daily MPD-NET patient support list and created educational events to make knowledge of MPNs accessible to patients. She could be compassionate and supportive of individuals who approached her with MPD problems. But when she felt an activity – or opinion — was counter to her thinking she could be curt and dismissive. And “she was used to being the smartest person in the room.”
Joyce was not a politician. She was a lawyer…. and a warrior.
Making Peace – An Orphan with Three Mothers
If matters could get tense in the MPD support world, there was plenty of energy around to pull things together. Ayalew Tefferi again stepped up and played a significant role in seeing that two of the largest organizations, MPD-NET and the MPD Research Foundation came together in mutual support.
Joyce, a founder and original board member of the MPD Research Foundation in 2000, left after a little more than a year to focus on her MPD-NET activities. The death of Harriet Gilbert, in 2003, left a giant personal and operational void. She had been the driving force behind the original doctor-patient conferences. Joyce took on that responsibility, the daily maintenance of MPD-NET now nearly 2000 members strong and the publication of the MPD Voice newsletter, for which she was the principal – sometimes, sole – writer.
She wouldn’t have much time for the MPD Research Foundation’s mission of identifying significant new avenues of MPD research and committed investigators and providing funds for genetic discoveries. As a result, little cooperation and some distance grew between the two organizations.
Ayalew Tefferi, who was then treating Joyce at the Mayo Clinic, arranged for a meeting at a nearby hotel suite between Joyce and Bob Niblack and Barbara Vanhusen executive vice president of the MPD Research Foundation. By all reports, it was a highly cordial meeting. Out of that came a long period of cooperation with links provided to each other’s websites and periodic exchanges of news and support of each other’s conferences and meetings..
What also came out of that meeting, at Tefferi’s suggestion, was the formation of an education foundation. Suddenly this small, underfunded, neglected little constellation of diseases had no fewer than three functioning foundations – MPD Research Foundation, CMPD Education Foundation and Friends of ET.
2007 a triumphant year.
In 2007, The Scottsdale Conference was another sold-out success; Joyce’s MPD-NET list had grown to 3000 members and she could count on volunteer support in daily management. The initiative she took in encouraging List members to provide DNA blood samples to Dr Gilliland at Harvard had attracted the notice of Laura Landro who writes “The Informed Patient” column for The Wall Street Journal. Her June 13 column, “Growing Clout of Online Patient Groups” featured coverage of Joyce’s work.
Closer to Joyce’s heart, however, would be publication that year of a scientific study in the peer-reviewed journal, Cancer. Titled “The burden of fatigue and quality of life in myeloproliferative disorders (MPDs: an international Internet-based survey of 1179 patients,” the study was authored by Ruben Mesa and included participation by some of the leading MPD researchers, Martha Wadleigh, Srden Verstovsek, Ayalaw Tefferi, John Camoriano.
The second name on the list of authors was Joyce Niblack.
“…for me, and the other MPN members she always was an inspiration. Not only by her knowledge spread selflessly to all of us, but also by her strong will to help us even when she was so ill that she hardly could hold her laptop. In the Jewish faith there are supposedly 36 righteous people around the world. With Joyce we would have to look for the 35 remaining only.” – Moshe Ayalon
Joyce’s health had been deteriorating. Her ET combined with PV. Eventually, she developed MF and serious breathing difficulties.”She had been on oxygen for years,” said Bob Niblack, a result of pulmonary artery hypertension. She had been able to control her symptoms with Interferon for many years but had to stop when she developed pulmonary hypertension.
In 2008 she travelled back to the Mayo Clinic in Rochester to participate in a clinical trial. She developed lymphoma while on the trial. Despite intensive care she could not survive the combined effects of myelofibrosis, lymphoma and her advancing pulmonary hypertension.
Her final notes to her beloved patients will show that while her body succumbed, her spirit prevailed.
The formidable capabilities of Joyce Niblack were already present in the young Joyce Ruth Krei, sitting across from her prospective employer at Abbott Labs so long ago. . Something had to happen to ignite those capabilities and link them to a cause.
Without the life altering diagnosis of myeloproliferative disease, without her early, intense collaboration with Harriet Gilbert and unwavering support of Bob Niblack, would Joyce have been transformed into such a prodigious leader rallying scientists, doctors, business people and, above all, patients to a common cause? .
Did the very disease that in the end, take her life give her the power to make that life so extraordinary?
What would Joyce say?
Subject: (no subject)
From: Joyce Niblack
Date: Tues. 30 Sept 2008 20:32:31 EDT
Some of you might want to check out http://www.musicalreflections.com. I’ve been in the hospital for the past 5 months being treated for lymphoma and was really messed up mentally by the time I got out of ICU. My occupational therapist helped me regain old and learn new relaxation techniques and one of the things she introduced me to was harp music which is surpirsinlgy soothing and helps deal with pain and anxiety The above site will introduce you to some of the resources I’ve found helpful.
SUBJECT:` Re: No rehab after all
From: Patricia Wagner
Date: Sat. 18 Oct 2008 16:13\
To Joyce and MPD-NET, I did indeed have a wonderful visit! I was we could have talked further but we were both too pooped to do more while I was at Mayo to get my annual BMB and to be seen by Dr. Mesa. What a phenomenal hematologist and human being he is. I was absolutely shocked to hear that Joyce was too well for rehab in Rochester, but as always Joyce has figured out a way to make things work out. While the bad news about local rehab was still quite fresh, I can vouch for the fact that she remained ladylike, but the look between us says it all.
….Oh! I got to give them both several big hugs and love from me and on behalf of everyone in MPD-NET…..
SUBJECT: RE: No rehab after all
From: Joyce Niblack
Date Sat. 18 Oct 2008 18:01 EDT
Pat, …Looking at you as we spoke reminded me of the first time Laurie Hopman and her husband spent time with Bob and me during her first consult with Dr Camoriano. In between her tests and appointments, we spent time in…. quilt shops and looking for cigar shops for Marty. We went back to our place to
chat before dinner and Laurie and I had both hit the wall. It was the first time I saw someone else with “the look.” We decided the prudent thing to do was take a nap….One of the great things about being with another mpd patient is we understand – no need to explain.
Tired or not, it was lovely to see you and I enjoyed the hug both from you and on behalf of the group. Now do tell us what you learned from Dr. Mesa from this trip or is it too early for the BMB results?
Joyce’s last four posts, January 27, 2009
(Note: One effect of on-going pain and drugs can be seen in the first, an unedited post, in response to an MPD-NET member’s question on stored stem cells posted on MPD-NET.)
SUBJECT: Re” how is Joyce
From: Joyce Niblack
Date: Tues, 27 Jan 2009 11:29 EST
They don’y know. The great debate doees on now.
SUBJECT: Re: How is Joyce
From : Joyce Niblack
Date: Tues, 27 Jan 2009 15:54 EST
We will provide a refund. Sorry he isn’t well enougn to attend.
SUBJECT: Re: how is Joyce
From: Joyce Niblack
Date: Tues, 27 Jan 2009 16:22 EST
I see Dr. C next week. He has a different take on this and I’ll probably
follow his advice. This is suprisiing that I have pancytopenia! But R-CHOP’s
not friendly to one’s marrow. Dr. T wanted me to have one more round but
the Mayo lymphoma expert predicted that would leave me with an empty marrow
and the way this is going, I think he was right!
Remember-you have an mpd. I was treated for lymphoma which is altogether
different. Auto transfusions don’t work well in lymphoma. They are temporary
(5 years at most) for mpd. So this is is a huge puzzle!!!!
SUBJECT: Re: Welcome home Joyce, and other info
From: Joyce Niblack
Date: Tues, 27Jan 2009 16:44 EST
Good luck Patti,
This isn’t easy and I hope you get some answerers.
And then portions of the announcement of February 14…
From: Laurie Hopman
Date: Sat. 14 Feb 2009 11:00
I know that Joyce would want me to keep everyone posted, so here goes:
Bob called this morning and let me know that Joyce died this morning, Feb 14th, at 10 am. She just couldn’t fight any more; too many parts of her body were just too sick and worn out. I wish I had been able to be there physically with her, but I’m pretty sure she was all right and not afraid.
The love that she and I have shared as friends will never die, and the love that she had for everyone that ever has experienced the difficulties and uncertainties of dealing with an MPD will also never die. You all know that many times during this past year when she was sick she would still check the list, and do her best to respond to questions or concerns. She would talk to me and worry about individuals and their situations….
This is the hardest post I will ever type to this list. I am sad for all of us in our loss…..
Laurie Hopman, MD
And a portion of a first tribute from a friend and physician
From: “Mesa, Ruben A. M.D.”
Date: Sun. 15 Feb 2009 16:26
Joyce’s passing hits all of us in the MPD community in our own way. Today the world is must a little grayer, the sun a little dimmer and hope just a little further away with Joyce no longer in this world.
Simply put, Joyce was one of the most extraordinary people I have ever met. One of those people who change the world around them to bring it closer to the way it should be.
It was my privilege to have known Joyce these last ten years and have walked part of the journey she faced with her illness. I learned from Joyce how to take the cards you are dealt in life, and still try to win the hand. Diagnosed with a difficult illness, she made herself a true expert in its therapy….She created a community, this very on-line community, to bring knowledge strength and peace to those facing the same challenge…..Joyce was my patient, but I think I received more from her than I was able to give back…..
… thank you for continuing to remember the one and only who is now in peace next to her maker. God bless her, her family and all of you who continue to remember her and keep her legacy going.
Ayalew Tefferi, M.D.
(Note: Photo sources, unknown. Most provided by Dr. Ruben Mesa.)
© Zhenya Senyak and MPNforum.com, 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Zhenya Senyak and MPNforum.com with appropriate and specific direction to the original content.