Tuesday, July 7, 2015

Neuro-Behcet's or multiple sclerosis? Articles that may help with diagnosis

Is your doctor trying to decide whether your symptoms and test results show neuro-BD, or whether they're from MS instead? Here are some links to articles that may help. They give info on MRI results and other test results that can aid diagnosis. You may want to have a medical dictionary with you -- or at least a diagram of the parts of the brain -- while you look at these articles:

(1) Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/epdf
(See Tables 1-4 in the blue boxes for a summary of the info)

(2) Diagnosis and management of neuro-Behcet's disease: international consensus recommendations (2014)
(Look at pages 6-14 for the final recommendations. The first 5 pages talk about how the researchers chose the symptoms and results to include in their recommendations.)

(3) Radiological findings in Behcet disease (2015)

(4) Technetium-99m-HMPAO SPECT and MRI of brain in patients with neuro-Behcet's syndrome (1998) 
(Shows how SPECT imaging can show brain lesions in some neuro-BD patients, even when their MRIs are normal.)

(5) Brain imaging in multiple sclerosis (2014) 
(Includes info on MRI, CT, and ultrasound imaging of the brain.)

(6) Radiology of multiple sclerosis (2000)
(Powerpoint presentation)

If you have a copy of "Essential Guide to Behcet's Disease" (2003), Chapter 3 covers the similarities and differences between BD and several other diseases (including MS).

You can see the most *recent* book's table of contents here: bit.ly/1vgpeNM

Thursday, June 25, 2015

A survey for anyone with chronic pain who has problems getting proper pain management...

A notice from the American Behcet's Disease Association:  

The Alliance for Balanced Pain Management (AfBPM) seeks to learn more about the experience of people with chronic or acute pain in accessing pain management, in order to develop useful educational tools or materials.

To help achieve this goal, the AfBPM has developed an extremely important short survey intended for people who are experiencing pain, to help identify potential issues associated with access to appropriate care. Respondents must be 18 years of age or older to complete the survey, and a family caregiver may answer the questions on behalf of the person with pain.

The survey can be found here: https://www.research.net/r/AfBPMPainSurvey 

Anyone with chronic pain can take this survey -- you don't need to be diagnosed with Behcet's. Your participation could help others finally get the treatment they need and deserve.

Saturday, June 13, 2015

An upcoming way for rare-disease patients in the U.S. to get access to FDA-approved meds

In the U.S., we've all known the frustration of not getting insurance approval to take FDA-approved meds -- because these drugs haven't been specifically approved for Behcet's

That situation might finally change.

A bill called the "OPEN Act (the Orphan Product Extensions Now) Act" will, if it's passed later this month as part of the "21st Century Cures Act,"allow FDA-approved drugs to be used off-label for diseases they weren't originally approved for. It would give drug companies financial incentives to re-label their already-approved drugs as FDA-approved treatment for "rare diseases." 

This bill was created by U.S. Rep. Gus Bilirakis (FL). According to Bilirakis, "The OPEN Act would unlock a new world of potential treatments and put FDA-approved, safe and effective treatments "on-label."' Insurance companies would then be able to pay for the meds, and it would also allow rare-disease patients to get access to the FDA-approved drugs they need.

If you want to read more (and encourage your own representatives to support the bill), it's here: http://rareadvocates.org/sign-on-to-support-the-open-act.../ AND here: http://www.tampabay.com/.../column-positive.../2232794

Joanne Zeis

Saturday, May 23, 2015

Introducing Patient Pathfinders: Your medical-information concierge

Have you just been diagnosed with a serious, rare and/or chronic illness and don't know where to turn?

As a medical-information researcher for the last 15 years, I can help you sort through the information overload for personalized answers:

  • Which internet information about my illness is reliable, and not a scam?
  • What are the most up-to-date treatments for my illness, with the best results? 
  • Who are the top specialists for my illness? 
  • Where can I go for treatment? 
  • Are support groups available? 
  • Can I participate in a clinical trial? 
  • Are there patient assistance programs to help pay for the medications I need? 
  • What questions should I ask my doctor before I move forward with treatment?

While my specialty is Behcet's disease, I have the experience and training to help with any illness. My services are available for people in any location.

I also assist healthcare providers facing a Behcet's patient for the first time, providing up-to-date, evidence-based information that's specific for your patient's needs.

Please see www.PatientPathfinders.com for more information.

Thursday, April 16, 2015

Guest post: Jessica MacLeod, a college student with Behcet's, AS and lupus

Jessica MacLeod is a college student who's not letting Behcet's, ankylosing spondylitis, and lupus define her future. Her blog is called "Incurable and unstoppable: The journey of an anthropology student with chronic, incurable illness" at www.unstoppablestudent.netHere's her post from April 11, 2015 (used with permission):

College students face all sorts of challenges while reaching for their degrees, but mix in incurable diseases and you've got a whole different story. Step into my world of classes, mid-terms, cafeteria food, projects, study sessions, medications, hospitals, doctors, fear, and pain.

Saturday, April 11, 2015

Take that autoimmune diseases! AKA: An amazing opportunity!

As you all know I am an Anthropology student. The American Anthropology Association holds a national conference every year. It's something I've only ever dreamt of going to. Thousands of people in my field, in all different fields of anthropology, coming together to share projects and ideas. The people at the very top of my field sitting on panels and giving lectures.

I have been working on a project of my own. It's about cultural signifiers and xenophobia in America. I can't say a whole lot about it beyond that since it is still in the works.

Any way, it was pointed out to me by a professor that my project fits in perfect with this year's theme for the AAA conference. So, she asked me to please submit it in hopes I will get selected to present it at the conference. THE NATIONAL CONFERENCE! Even if I don't get picked, I'm still getting to go!

I'm going to be going to Denver for five days in November meeting people from all over in my field. This could open doors for me that I never even thought about. My diseases aren't going to take this away from me. I don't care how sick I am, I'm going, and I'm going to have one hell of a time!

The only thing is that proposals are due by this Wednesday so I don't have a whole lot of time to prepare. Thankfully, I have a good friend who has just earned a literary Master's degree and she's helping me edit things. I'm SO nervous. This could mean so much for me and my education.

If you had told me even three years ago I would be a straight A student, going to a national conference in my field, and looking at possibly presenting alongside masters students and people with one or more PhD's, I would have thought you crazy.

I have Lupus, Behcet's Disease, and Ankylosing Spondylitis. I take 14 medications every day, most of them more than once. I also take 6 other medications as needed for pain, nausea, and breathing. I have a nebulizer I use most days and I take an injection once a week. I am in constant pain and discomfort. And here I am. Making a name for myself in my chosen field.

NOTHING will ever hold me back. My diseases may get me down but they will never keep me down. No matter how many papers I write from a hospital bed or tests I study for in waiting rooms, no matter how many classroom trash cans I throw up in, no matter how many sleepless nights I go through because of pain, I will persevere. I will win. I will stand tall and proud and say nothing can stop me.

Kick me to the ground and I will stand back up. Just you wait and see, I'm going to be something amazing.

Jessica MacLeod

Wednesday, April 8, 2015


DATE POSTED: March 23, 2015
TYPE: Contractor (Paid) Position
TIME COMMITMENT: 3-5 Hours Per Week (Approximately)
TERMS: Indefinite After Signing Service Agreement and Completing A Six (6) Month Probationary Period, & Acceptable Annual Performance Review
DEADLINE: APRIL 30, 2015 – Apply via e-mail...must attach resume, application letter, salary requirements, and references to:  Mary Burke, Vice President at mburke@behcets.com.

The Bookkeeper is a paid contractor position of the ABDA reporting to the Treasurer. Under the direction of the Treasurer, this position is responsible for performing a variety of bookkeeping and accounting duties; including, financial record keeping and transactions including, accounts payable, accounts receivable, and general ledger. Desired individual will have experience with Quick Books for non-profits, an outgoing and friendly personality, demonstrated professionalism, and tact in communications with a diverse group of individuals, strong organizational and time management skills, and acute attention to detail.

• Collects checks sent to PO Box bi-weekly, and daily during fundraising events.
• Annually, renews state licenses (Due Jan. 1), and PO Box renewal (Due Aug. 1)
• Annually, prepares 1099’s and pertinent tax information for accountant. (Process in Jan., due Feb. 1st.)
• Records volunteer hours. (Turned in the 9th of each month.)
• Processes and ensures all accounts payable are appropriately categorized, recorded, approved and paid in a timely manner. (Pay bills submitted by the 15th of each month.)
• Processes and records accounts receivable, and ensures all receivables are accurately categorized and recorded in a timely manner.
• Works closely with the Treasurer and/or Board to ensure accuracy and timely completion of responsibilities.
• Prepares and transmits or mails, or takes bank deposits to bank. Reconciles bank accounts, and provides reports to Treasurer and Board monthly; maintains clear records of all account activity, and alerts Treasurer and Board as to past-due accounts in a timely manner. (Month end close out, and report to Board, before Monthly Board Meeting the 3rd Wednesday of each month.)
• Proactively maintains highly organized filing system; files invoices, payroll paperwork, reimbursements, volunteer hours, insurance information, and other financial records. (Monthly as needed.)
• Demonstrates a high level of professionalism in dealing with confidential and sensitive issues.
• Assists in the development and implementation of systems and procedures as needed.
• May be asked to travel to fundraising events to assist with financial aspects.
• Assists with special projects, and conducts research as assigned.
• Performs other duties as assigned by the Treasurer and Board.

Must own computer with internet connection, printer, scanner, copier, proven track record in accurate, and efficient Bookkeeping experience, proficient in QuickBooks and Microsoft Office, strong working knowledge of database programs. Blackbaud experience is a plus. Live in Rochester Hills, MI, or surrounding area a plus.

This contractor position can expense business-related items that follow standard Expense Reimbursement Policy or are approved by the Board.

Estimated Time Commitment (per week): It is estimated that this position requires a commitment of 3-5 hours per week.

DEADLINE: APRIL 30, 2015 – Apply via e-mail...must attach resume, application letter, salary requirements, and references to:  Mary Burke, Vice President at mburke@behcets.com.

Sunday, March 15, 2015

Nominations now open for 2015 Global Genes RARE disease advocacy awards

From the Global Genes website:


It’s that time of year again, when the rare disease community looks amongst themselves to identify and nominate agents of change, agents of innovation, and individuals who are working tirelessly on behalf of those affected by one of the 7,000 rare diseases impacting over 350 million people worldwide. Rare disease activists come from many different disciplines and are usually not recognized for the good work that they are doing. This is our opportunity as a community to come together to celebrate and honor those who are setting higher standards, making significant changes and fearlessly attacking challenges differently. Join Global Genes in recognizing these incredible individuals by nominating your Champion of Hope today.

All nominees will receive a special recognition gift, and those who win will be asked to join us in Southern California in September at the Tribute To Champions of Hope Gala. Winners must be available Friday, September 25 and Saturday, September 26.

**Award Recipients are not based on number of submissions. All nominations will be reviewed and winner decided by the Global Genes Award Committee**   

The six award categories are: 
  • RARE Champion in Medical Care & Treatment
  • RARE Champion in Science
  • RARE Champion in Advocacy​
  • RARE Champion in Teen Advocacy​ 
  • RARE Champion, Collaborations in Advocacy
  • RARE Champion, Collaborations in Science & Technology 
Go here to nominate a person or group:  http://globalgenes.org/2015nominations/

Receiving one of these awards is a true honor for patient/disease advocates. I have Behcet's-related suggestions for some of the categories on the list -- let's collaborate and get Behcet's the global recognition it deserves! Feel free to contact me at jzeis at charter dot net.

Thursday, February 19, 2015

The ABDA has a new website!

Take a few minutes to check out the new and improved ABDA website -- a nice clean design, easier navigation and updated information. The site was created through a grant from Celgene, along with hundreds of hours of effort from ABDA volunteers and staff. Great job!

See for yourself at  www.behcets.com.

Thursday, February 5, 2015

Behcet's and the measles vaccine

There's no published, direct connection between the measles, mumps and rubella (MMR) vaccine and Behcet's flares/complications, but you should still be careful. Cover all the bases with your doctor before getting the shot, since the MMR vaccine is a weakened (but still live) virus.

According to the Centers for Disease Control (CDC), "Some adults should get the MMR vaccine: Generally, anyone 18 years of age or older who was born after 1956 should get at least one dose of MMR vaccine, unless they can show that they have either been vaccinated or had all three diseases" [measles, mumps, rubella]. 

Not sure if you've had measles, mumps or rubella? Ask your doctor for an MMR antibody titer test first, to check antibody levels in your blood. It's a simple blood draw.

Who should wait or not have the vaccine at all?  

The CDC has a list on their website, and some of the items may apply to you. The medications you're taking now are especially important (http://www.cdc.gov/vaccines/vpd-vac/should-not-vacc.htm#mmr). Please read the whole list for more info.

Here are a couple of articles published in Dec 2014 on vaccinations (including MMR) in people with autoimmune/rheumatic inflammatory diseases. Please share them with your doctor(s):

(1) This first article is free and available in full online
(do an in-article search for "MMR" to find the info you need)
Effects of biological and non-biological immunomodulatory therapies
on the immunogenicity of vaccines in patients with rheumatic diseases.

McMahan ZH, Bingham CO 3rd.
Arthritis Res Ther. 2014 Dec 23;16(6):506.
doi: 10.1186/s13075-014-0506-0.  PMID:25587634

(2) This next article only provides an abstract (summary). Your doctor can get a full-text copy, or if you live near a medical library, you can get a copy on your own.
Vaccination of patients with autoimmune inflammatory rheumatic diseases.

Westra J, Rondaan C, van Assen S, Bijl M.
Nat Rev Rheumatol. 2014 Dec 9.
doi: 10.1038/nrrheum.2014.206. [Epub ahead of print] Review. PMID:25486980

See the full Table of Contents for my new Behcet's book, published in Dec. 2014: 


Sunday, January 18, 2015

Table of Contents for the new Behcet's book

My third Behcet's book has detailed answers to
92 of the most frequently asked questions received
from patients over the years.

2015 National Health Information Merit Award Winner,
Patient Education

Foreword by Kenneth T. Calamia, MD
Mayo Clinic College of Medicine
"[Joanne] updates and builds on an earlier work, Essential
 Guide to Behcet's Disease
(2003). What is unchanged

is the author's passion as a Behcet's patient, researcher
and advocate, to empower the reader with understanding
and tools to meet and contain the challenges of this disease." 

ISBN-10: 1938549406     ISBN-13: 978-1938549403

Amazon listing in the US:

US only: 30% off when using code MLIWEB at the publisher's website:  

Amazon listing in Canada:

Amazon listing in the UK:


Chapter 1.           An overview of Behcet’s disease
1              What is Behcet’s disease?
2              Is it Behcet’s disease or Behcet’s syndrome?
3              What kinds of doctors treat Behcet’s?
4              How can I find a doctor in my state or country who’s familiar with
                treating Behcet’s?

Chapter 2.           Behcet’s disease around the world
5              Where is Behcet’s disease most common?
6              What about people who move from places where Behcet’s is common to
                places where isn’t?
7              Which Behcet’s symptoms are most common?
8              How is Behcet’s in the U.S. and Western/Northern Europe different from
                Behcet’s in Silk Road countries?

Chapter 3.           Diagnosis of Behcet’s disease
9             Is there any test that will definitely prove you have Behcet’s disease?
10           What types of test results are common (but not required) when trying to
               diagnose Behcet’s?
11           What is a pathergy test, and is it necessary for diagnosis?  
12           What is an HLA test?
13           Do you need a positive HLA-B5 or HLA-B51 test result to get a Behcet’s 
14           Does a positive HLA-B5 or HLA-B51 result mean you’ll have a worse case of 
15           What are “Classification Criteria” for Behcet’s?
16           Should doctors use Classification Criteria to diagnose Behcet’s patients?
17           Do you need to show all of the standard Behcet’s symptoms at the same time 
               to get a Behcet’s diagnosis?
18           Can you get a Behcet’s diagnosis even if you live in countries where it isn’t 
               common, like the U.S. or the U.K.?

Chapter 4.           Oral and genital sores and other skin lesions
19           Does everyone with Behcet’s get mouth ulcers?
20           What types of skin lesions can be caused by Behcet’s, and what do they look  
21           Are there over-the-counter or prescribed medications to help with prevention, 
               pain and/or healing of these ulcers?

Chapter 5.           Eye disease in Behcet’s
22           What types of eye problems can happen with Behcet’s?  
23           If I have inflammation in one eye, will my other eye be affected too?
24           What type of doctor should examine my eyes?
25           What types of eye problems need to be seen immediately?
26           Is it okay to have eye surgery – like cataract removal or Lasik – if you have 
27           Can I wear contact lenses if I have Behcet’s?
28           Am I going to go blind? 

Chapter 6.           Behcet’s and the nervous system  
29           Does Behcet’s target the central nervous system or the peripheral nervous 
30           What is parenchymal involvement in neuro-Behcet’s?
31           What is non-parenchymal involvement in neuro-Behcet’s?
32           What are some other medical issues of neuro-Behcet’s?
33           Can Behcet’s cause psychiatric or cognitive problems?
34           How do specialists diagnose neuro-Behcet’s? [For clinicians]
35           If I have headaches, does that mean I have neuro-Behcet’s?
36           Can neuro-Behcet’s cause seizures?
37           When are memory problems normal and when should I worry?  
38           What can I expect long-term if I have neuro-Behcet’s ?

Chapter 7.           Behcet’s and the gastrointestinal (GI) system  
39           What parts of the GI tract can be affected by Behcet’s?
40           What types of GI symptoms can Behcet’s patients have?
41           Can surgery in the GI tract be a problem for Behcet’s patients?
42           How can specialists tell the difference between Behcet’s and Crohn’s disease?

Chapter 8.           Behcet’s and the ears, nose and throat
43           Can Behcet’s affect your hearing?
44           If you suddenly lose your hearing, can you get it back?
45           What happens if your inner ear is affected by Behcet’s?
46           Can Behcet’s cause ulcerations or lesions in your nose, or affect your sense of 
47           Can Behcet’s cause swelling or ulcerations in the throat?

Chapter 9.           Behcet’s and the cardiovascular system
48           What is the cardiovascular system?
49           Can Behcet’s affect the heart?
50           What symptoms might point to heart involvement?
51           How do specialists check for heart involvement?
52           What types of blood vessel problems can be caused by Behcet’s?
53           What are the major vein-related problems for BD patients?
54           What are the major artery-related problems for BD patients?

Chapter 10.         Behcet’s and the lungs
55           What kinds of symptoms could point to Behcet’s-related lung problems?
56           What specific lung issues have been seen in Behcet’s patients?
57           Can you have Behcet’s-related lung problems even if you have normal test 
58           Can people with Behcet’s develop BOOP?

Chapter 11.         Behcet’s in families and children
59           Is Behcet’s genetic?  
60           Can Behcet’s be passed on to your children?
61           Can more than one person in a family have Behcet’s?  
62           What is “genetic anticipation” and how does it apply to Behcet’s?
63           Do children with Behcet’s have different symptoms than adults with Behcet’s?
64           What other Behcet’s-related issues in children are especially important?
65           Will my child outgrow Behcet’s at puberty?

Chapter 12.         Behcet’s in pregnancy and postpartum
66           Do Behcet’s symptoms get better or worse during pregnancy?
67           Is there any information on pregnant women with Behcet’s in the United States?
68           Does Behcet’s cause problems with fertility?
69           Do women with Behcet’s have more miscarriages than normal?               
70           What kinds of complications have been reported in Behcet’s pregnancies?  
71           What Behcet’s medications are safe to take during pregnancy and
72           What is neonatal Behcet’s?

Chapter 13.         Treatments for Behcet’s disease  
73           Which medications work best for which symptoms?
74           Why can’t I use prednisone all the time if it works so well?
75           Will immunosuppressive medications make my hair fall out or lead to cancer?
76           Do Behcet’s patients have more complications after surgery than normal?
77           How can I find out about clinical trials for Behcet’s?  
78           Is bone marrow (stem cell) transplant a possible treatment for Behcet’s?

Chapter 14.         Disability benefits and prognosis
79           Is it hard to get Social Security disability benefits for Behcet’s in the United 
80           Is it true that Behcet’s “burns out” in some patients as they get older?  
81           A lot of Behcet’s patients who post on social networks seem really ill. Am I 
               going to be that sick someday, too?
82           What are the chances I’ll be hospitalized at some point with Behcet’s 
83           What’s the life expectancy for someone with Behcet’s?

Chapter 15.         Miscellaneous questions: Sleep, vitamin D, tattoos, sex, teeth, fibromyalgia and joints, flu shots, and genitourinary issues
84           Can Behcet’s cause sleep problems?  
85           Do Behcet’s patients have low levels of vitamin D?
86           Does tattooing cause problems for people with Behcet’s?
87           Can Behcet’s cause sexual problems?
88           Can dental problems be related to Behcet’s?   
89           Do Behcet’s patients have a problem with fibromyalgia?
90           What types of joint involvement are common?  
91           Is it safe to get flu shots if you have Behcet’s?
92           What are some genitourinary problems linked to Behcet’s?

This new book is available at Amazon.com sites around the world (in paperback and Kindle editions), at barnesandnoble.com and other book distributors, and as a special order at any local bookstore. Your local library may also be able to order a copy for you.
Amazon listing in the US:

  • ISBN-10: 1938549406
  • ISBN-13: 978-1938549403

Saturday, January 10, 2015

Behcet'sLive -- Take part in a unique video research program

PLEASE NOTE: Bedrock Healthcare in the UK is working on this research in conjunction with Celgene Corporation (makers of Otezla [apremilast], which is in clinical trials to treat BD). They need 8 people to participate from the US and 8 people from Turkey; at this point, they've gotten a good response from women and need to hear from more men.

From their recruitment website (http://www.behcetslive.info):

We would like you to consider taking part in an exciting project called Behcet’sLIVE that will look at how people with Behcet’s Disease and their families live with the condition on a day to day basis. Your experience will assist other people with Behcet’s Disease by helping healthcare professionals and providers of treatments to better understand their patients’ point of view.

Bedrock Healthcare, a UK based organisation, is running this unique research project. Bedrock Healthcare is a patient centric organisation with a history of running observational research programmes in various disease areas, both common such as diabetes, and rare such as haemophilia. They have developed their step-by-step methodology for patients to follow through experience and understanding gained from the previously conducted programmes. This makes taking part in the research not only simple, but interesting and extremely fulfilling for you.

We send you a video camera and easy to follow instructions on how to use it. All we need is about five minutes each day talking about what it is like for you having Behcet’s but we encourage you to film for longer if you wish. We will of course keep in touch with you to see how you are doing and offer any help you may need or answer any of your questions.

What you record may be used in different ways to help healthcare professionals (specialist doctors and nurses) and the sponsor company to improve care and services for people with Behcet’s disease. In your video diaries, we want you to tell us what you think is important – there is no script and no hidden agenda – what you say is totally up to you. There are, however, some aspects of your experience that we would like you to talk about and so we will include a few general topics and questions to guide you. 

We may also wish to share some of the footage with people who have Behcet’s Disease and their families via patient support resources, which may include websites or DVDs. If this is the case, we will contact you to make sure you agree for it to be used in this way. 

In addition, we would also like members of your family (who live with you and are over the age of 18) to give their views on the impact of your condition on your life and that of your family. We would also like you to tell us what you thought about taking part in the project and let us to ask you about anything you’ve said that we need to understand better.

After you have completed the filming period we will arrange a time to telephone you. This will give you the opportunity to tell us what you thought about taking part in the project and enable us to ask you about anything you’ve said that we need to understand better.

Please go to their website for more information: