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Posted on Wed, Jan 2, 2013 : 5:59 a.m.

Family struggling with woman's numbing, rare Guillain-Barre syndrome

By Amy Biolchini

Editor's note: This story has been edited to indicate Heather Gales had not received a flu shot, and with additional information from the GBS|CIDP Foundation.

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Jackson resident Dagan Gales, 28, watches as his wife Heather, 26, uses a computer to help her communicate as University of Michigan hospital RN Jon Stasevtich administers medicine into her IV Dec. 13 at the hospital. Gales has been in and out of the hospital since mid-November after being diagnosed with a rare form of Guillan-Barre syndrome.

Melanie Maxwell I AnnArbor.com

A rare, incurable illness has paralyzed more than a Jackson woman’s body.

Heather Gales, 26, had been slowly losing feeling in her body since mid-November, beginning with her feet, then her legs and moving upward.

Searching for answers in and out of area hospitals, Heather was diagnosed with a rare form of Guillain-Barre syndrome: A disorder in which the body’s immune system attacks the nervous system, causing muscle weakness and respiratory problems.

The disorder spread rapidly, quickly rendering Heather's legs useless.

The medical bills began to mount as she was put into intensive care for a short period of time -- and the life of her family has been put on hold.

Now a patient in a neurology ward at the University of Michigan's University Hospital, Heather has not been out of a hospital bed for weeks on end. She can’t speak as a result of the tracheotomy that’s been placed in her neck to help her breathe.

“She went from being so active to so helpless,” said her husband, Dagan Gales, 28. “It is really hard to see her hooked up to everything like that.”

Typically, Guillain-Barre syndrome affects the sensory and motor nerves. For Heather, her nerves were affected more severely than in most cases of the syndrome, which means her entire body went numb.

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Heather holds her husband Dagan's hand as she lays in a hospital bed at the University of Michigan Dec. 13. Gales has missed Thanksgiving, Christmas and three family birthdays while in the hospital.

Melanie Maxwell I AnnArbor.com

As the primary wage earner for a recently combined family with six young children between the ages of 2 and 9 years old, Heather has not been able to work since she first began losing feeling in her feet in early November. Her illness has sent the family spiraling, and they weren't able to spend Christmas together.

Dagan had been a stay-at-home father since he married Heather in July. Heather worked long hours on the line at a plant in Jackson manufacturing air conditioning units for vehicles.

Waiting to be hired on full time from her temporary employee status, Heather had opted to save her money and enroll in a health insurance plan with the company once she was hired.

Without insurance, Heather has since enrolled in Medicaid to help foot the bills for her hospital stays. Nevertheless, the family is facing financial struggles: They have received utility shutoff notices at their Jackson home, and are behind on their rent.

The family has started a Facebook page to support Heather's recovery during her illness, where they've posted information on how to donate money to help the family get through their hospital bills.

Diagnosis and treatment

Heather's nervous system — which controls basic functions like heart rate, blood pressure and temperature — also was affected to a larger extent than in most patients, said Dr. Ryan Jacobson, the doctor managing her treatment at U-M.

Two tests were used to confirm Heather's diagnosis: A spinal tap revealed a high protein level in a normal number of cells, and an electromyography test found her peripheral nerves and muscles were not responding in a normal way to small electrical shocks and needles, Jacobson said.

What brought the rare syndrome on is not entirely known. In some cases, people sick with the flu have developed Guillain-Barre -- but that's not the case with Heather.

It's more likely that individuals will develop Guillain-Barre syndrome from having the flu than from developing the syndrome after a flu shot, according to the GBS|CIDP Foundation. Heather had not received a flu shot prior to getting sick.

Other viral and bacterial infections have been linked to the onset of the syndrome.

Treatment for Heather's Guillain-Barre syndrome involves the intravenous injection of antibodies to try to neutralize the body’s attack against itself, Jacobson said. The treatment has appeared to stabilize the amount of numbness and weakness Heather has been experiencing, Jacobson said.

Friday, Heather was transferred to a physical therapy unit where she will work to regain her strength. Her ability to regain her muscle control and lung strength will determine how long she will have to remain in the hospital.

Role reversal

Dagan has been spending the majority of his days at his wife’s bedside in the University Hospital, making sure his wife can breathe through her tracheotomy and keeping her company. Cards expressing well-wishes fill her window.

At home, Heather usually is the one taking care of her husband. Now, the roles are reversed. The couple met each other in middle school, and life brought them back together recently.

“I would never wish this upon anybody,” Dagan said, explaining he only leaves his wife’s side for several hours at a time. “It hurts to have to leave her.”

Camping out in an armchair next to his wife’s hospital bed, Dagan has trouble sleeping at night.

The couple’s six children are each staying with their other parents, and Heather's unexpected, debilitating sickness has caused the family to miss three of their children’s birthday celebrations. Dagan worries the most about having a home for his wife to come home to when she is well enough to leave the hospital.

Using a computer device to help communicate, Heather Gales typed in a sentence on a morning in mid-December. She can’t speak because of the tracheotomy tube in her neck.

“It’s all tingly,” said the animatronic voice from the device, amplifying Heather's message in a British accent.

“I just can’t wait to hear my wife’s voice again,” Dagan said.

The future holds a lot of unknowns for the family. But Heather knows the first thing she’ll be doing as soon as she’s able to go home:

“Take a shower, see my kids and sleep next to my husband,” she said.

Amy Biolchini covers Washtenaw County, health and environmental issues for AnnArbor.com. Reach her at (734) 623-2552, amybiolchini@annarbor.com or on Twitter.

Comments

don samuels

Wed, May 22, 2013 : 12:59 a.m.

Praying for Ms Gales. I am currently recovering from Guillian Barre. I can understand what you and the family are going through. I was in perfect health and very active. I have never been in a hospital unless visiting someone. I am 52 and in my 9th month,But God has bought me and my family through a ordeal I thought would not end. I am in therapy and learning to walk again. This is the hardest task I ever faced, but I am coming out of this stronger and better than ever. please pray and let God do his work and loved ones please continue to pray and support those going through GBS. I am in Atlanta and would like to hear from others. Don Samuels

Michele

Mon, Mar 18, 2013 : 11:56 a.m.

Hello, my aunt has just been diagnosed w/Guillain Barre syndrome, but they have caught it early and given her a ton of immunoglobulin as treatment. Does anyone know what the prognosis is, if caught early?? Very worried about her.

Marlene Nottage

Wed, Jan 30, 2013 : 7:05 p.m.

So very sorry to read of Heather's fight against GBS. I just was released after30 days in hospital, 12 in ICU, tubed, several weeks in rehab and now continuing OCT and PT. Received a flu shot, 4 days later started to feel ill, coughing, achy, chilling. Went to primary Dr., just viral. 4 days later while brushing my teeth in the morning, I took a swallow of water which came out of my nose and couldn't breathe.. Husband called 911, in ER, probably 30 tests later including 3 MRIs 2 CATs, spinal tap confirmed GBS-Miller Fisher syndrome which has attacked my eye muscle in left eye, afrer 3 weeks in hospital could not walk, dizzy from the eye problem, seeing double, prism glasses helped. Now two months later, am walking, not driving yet, weakness in right arm, hand and shoulder. I'd rather have the flu than all thse problems but lucky I have only these problems. No timeline if or when they will leave me. My prayers are with Heather for a good recovery. I know PT is tough and makes you so tired, you just want to lie down. Keep your spirit and chin up, Heather. You will get better!

valerie gullotti

Thu, Jan 24, 2013 : 6:11 p.m.

I too have had GBS... I had just turned 50, was in great health { Ithought} never had a flu shot up until 4 months before my aweful experience with this illness. I had just met this wonderful man a month before this and we were on a road to Ca. to see my daughter when I started to become ill . Started with soreness in my back and achey flu like feelings then with in one day feet and hands tingling. I fell and within hours I was paralized to my waist. Hospitalized the next day and within hours paralized to my eye brows.. I was in intensive care for 6 weeks, put in a coma for two with tube to breathe and after the two weeks still could not move, my loving daughter was there everyday to help me thru this. They had to open and close my eyes, fed thru tubes and stayed like this for 6 weeks. I had steriod treatments, plasma furetheses {not sure about that spelling} after 6 weeks transferred to a rehab center with stroke victims to learn to swallow, eat, talk and hopefully walk again {which I was told I would not.} Was in Rehab. facility for two weeks and then my new boyfriend came back to Ca. and brought me to Seattle and I was lucky enough to meet a Dr. who had written about this illness and was put in a rehab program. at the University of Wa. hospital. I was in a wheelchair and still could not walk or feed myself for several months. gradually I started making some progress and it took almost a yr. before I could walk, but today 18 yrs. later, I walk, dance, zumba and even ride on a harley. Sometimes when I get overly tired my one foot will drag, but other than that I am so thankful and the wonderful man I met a month before this is still the love of my life. So Heather, keep good thoughts , work hard at rehab and have lots of patience and faith. My prayers are with you and your family. Valerie

don samuels

Wed, May 22, 2013 : 1:12 a.m.

Hi Valerie your report is encouraging. I am currently in rehab from GBS. I went through the same ordeal you went through, but they had to sew my eyes shut. I have a wonderful wife and most of all God on my side like you. Question did your feet come back at the same time or did one foot come back than the other foot followed. God bless you Don Samuels

Angela Thorpe Dos

Sat, Jan 12, 2013 : 11:36 a.m.

My father had a flu shot in 2010. Diagnosed with GB a few months later. Was recovering and then took a turn. He was a quadriplegic for a year before dying in 2012. No flu shots for me. I'd rather have the flu.

15crown00

Thu, Jan 10, 2013 : 9:53 p.m.

You people talking about technical differences between this and that MAKE ME SICK.Focus on the tragedy or shut up.

Joyce Witten

Thu, Jan 3, 2013 : 5:49 p.m.

I was diagnosed with Guillian-Barre w/rare Miller Fisher varient (starting at the eyes & going down) in 2010. I lost all functions & was in the hospital for 4 mos. I had not had a flu shot but did have a sore throat.. The first 10 wks progress was very slow & then the next six mos. was faster. Im now aged 70 and after two years I can do most of what I wish and am very grateful. I found the key was family & friend support, hard work, grit & determination. Wishing you & your family all the best.

Di Di

Thu, Jan 3, 2013 : 12:42 p.m.

My heart goes out to you Esp Heather. I have been where you are now. Very scary . The fear of never walking again never being the Mom I wanted to be or living my life as I had planned.Recovering from GBS was the hardest battle of my life. The physcal therapy at first just seemed more then I could handle I would get so tired which is also a side affect . To get threw it all I just kept telling myself I will not let this steal my life. I will walk again . I will return to work. Just remember all the hard work will pay off. Your progress at first will be slow. But hang tuff it gets easier with time. And let people help.They want to.Let them! You will discover a inner strength that will be the force to drive you. And never never give up. You will be strong again. You will walk again. You can still be all you want to be. The more you put into your therapy the more you get back. HANG TUFF ! If I can do it YOU can too.

jns131

Thu, Jan 3, 2013 : 12:03 a.m.

Another reason not to get the flu shot. Too many unknowns. You get sick you get sick. Happens. Glad to hear there is a recovery process in this. Otherwise, push me off the cliff. Do not want anyone taking care of me.

G. Orwell

Wed, Jan 2, 2013 : 9:46 p.m.

60 Minutes piece on the 1976 swine flu scare. Sound familiar? Caused GBS back then to. http://youtu.be/go-TIyJJcH8

A2K

Wed, Jan 2, 2013 : 7:06 p.m.

I wish Heather a good recovery, and many folks with GB have a reasonably-good prognosis (my father had GB after a series of shots for Army before Vietnam). I thought I had GB last year, as my symptoms were almost the same as Heather's (numbness slowly creeping upwards from my feet to waist-level, etc.) - but unfortunately it was my first bad MS attack :O(

A2K

Thu, Jan 3, 2013 : 7:11 p.m.

Thank you, I'm doing very well considering :O)

Craig Lounsbury

Wed, Jan 2, 2013 : 10:05 p.m.

I wish you well. I have a loved one battling MS.

Opinionated

Wed, Jan 2, 2013 : 6:22 p.m.

I had Guillain-Barre in 1978. I also had difficulty breathing but did not need a tracheotomy. The recovery is very slow and grueling. Physical therapy is painful and exhausting. I recovered well with only some numbness in the palms of my hands and feet remaining. The doctors told me at the time that whatever I was able to do in a year was how I was going to be the rest of my life. I worked very hard to get better. At the time my doctor did not believe in using steroid treatments. I hope she recovers well and my prayers go out to her and her family.

eyeonthenews

Wed, Jan 2, 2013 : 5:07 p.m.

For the commenters that have speculated that the cause of this young woman's illness was caused by a flu shot, if you look under the Diagnosis and Treatment section of the article you will see in the third paragraph they state this is not the case for Heather. They aren't sure what brought this on and think it's possibly caused by some other viral or bacterial infection.

Michele

Mon, Mar 18, 2013 : 12:08 p.m.

This is true, which was news to me. I am a Microbiologist, and am familiar w/this syndrome/disease. It does seem to correlate w/getting the flu shot, but can be brought on by just having an infectious disease, meaning bacterial or viral, which was news to me. My AUNT has just been diagnosed and she had recently had mono of all things, which is viral. They say they've caught it early and r dosing her w/copious amts of Immunoglobulin. I'm very worried about the prognosis- does anyone have any answers or words of wisdom for me??!!

teeters

Fri, Jan 4, 2013 : 8:26 p.m.

Then WHY is it the main "possible" cause. This is the problem with AA.com. The poor scientific writing skills of these journalists has lead to this misconception. Maybe if there were actual scientific writers, or if they consulted with, I don't know-the thousands of doctors in this town, we would not have this issue.

Liz

Wed, Jan 2, 2013 : 3:27 p.m.

My Mom was a retiree when she began experiencing the symptoms of numbness and ascending paralysis. Since two of her sisters had suffered from brain tumors, she assumed that was also her fate. Upon recieving her diagnosis of Guillan-Barre Syndrome, she thanked God, and said she would get over that! Through excellent medical care, hard work with her physical therapists, and the passage of time, Mom made a full recovery. And this was back in the 1970's in Omaha, Nebraska. I wish Heather the same return to health that my mom had....she can get well and be restored to her family. It sounds like all the family, on both sides, is pulling together...now is when family really counts! Good luck to Heather and Dagan, and wishing you sunshine in the coming spring. This, too, shall pass!

G. Orwell

Wed, Jan 2, 2013 : 3:08 p.m.

I would bet it was a flu shot that caused the GBS. Same thing happened with the swine flu hoax in the 1970's and in 2009-2010. Many people came down with GBS. I believe the insert in all flu shot say it could cause GBS and many other dangerous side effects. Do not take ANY vaccines. There are far better natural ways of staying healthy without injecting yourself with foreign substances that cause numerous side effects. If she did take the flu shot, the pharmaceutical company and the pharmacy should compensate the family. Take it to the vaccine court. I feel really bad for the family. I hope things work out.

teeters

Fri, Jan 4, 2013 : 8:24 p.m.

Yes Vaccines cause autism. (I TYPED THAT WITH A TON OF SARCASM). It's not a shock that the U.S. is falling behind in the sciences. Learning about science on the internet is not the way to educate the public. The first thing we should teach the public is the difference between causation and correlation. Did you know that global warming is caused by the decrease in the number of pirates? Look it up; there are less pirates and the average global temperature is rising! There is not a single published article that links vaccines with autism! There is a retracted article that was corrupt and flawed, but hey, if you want to use that for your evidence then all hope is lost. Did you ever think that Autism was under-diagnosed in the past or that we are mis-diagnosing now? Stop spewing misleading and WRONG facts that you read on the internet or heard from the TV! Pick up a scientific journal and get the facts for yourself. Oh, I forgot that our scientific education is lacking and that may not be possible for some.

jns131

Thu, Jan 3, 2013 : 12:07 a.m.

Our child only got the minimum of vaccines. She got the rest at age 5. I do not trust those who say they have to have them in mega does before age 3. I say sparse them out and then finalize them before 1st grade. I agree wit Orwell. Autism is on the rise. Gee I wonder why? Maybe the rate of vaccines and flu shots given? Sparse out the vaccines and you might see a drop in a lot of childhood problems. IMO

a2citizen

Wed, Jan 2, 2013 : 5:24 p.m.

At least 500,000 Americans died in the 1918 Spanish flu pandemic. Worldwide estimates are 3-5 per cent of the total world population (20,000,000 deaths, at least). Unless of course you think those numbers are a hoax, too.

Gerry

Wed, Jan 2, 2013 : 4:34 p.m.

The article implied, and the reporter clearly stated in previous comments, that she did not take the flu shot. Vaccines have saved millions of lives, and have made horrible diseases like polio and small pox a thing of the past. There is absolutely no credible science (results linking autism to the flu shot were actually faked) to state that a person runs a greater risk of dying from a vaccine than from the disease which it is supposed to protect against.

themommer

Wed, Jan 2, 2013 : 2:54 p.m.

Enso, I believe she is on medicaid now and is being treated at U of M. Sounds like good healthcare to me. The fact that she had to stop working and was the breadwinner of the family is probably the biggest reason the family is having financial problems. Instead of blaming Repubs why not offer to help this family. And, duh, we have Obamacare now, what more do you want? I hope Ms. Dagen has a rapid recovery and the family gets all the support they need.

EyeHeartA2

Wed, Jan 2, 2013 : 4:20 p.m.

Don't bring facts into a good partisan bashing. Enso has his version of reality and your post is making that more difficult.

towncryer

Wed, Jan 2, 2013 : 3:04 p.m.

@themommer, you must be new around here--by the end of the day someone will blame this on "slick rick", lol. Good luck to this family, and wishing her a complete recovery. I also think some of "teeters" suggestions would have been nice additions to this story.

teeters

Wed, Jan 2, 2013 : 2:05 p.m.

Actually the most common risk factor for Guillain Barre Syndrome (GBS) is due to infection from the bacterium Campylobacter jejuni. C. jejuni is a bacterium that causes gastroenteritis in humans (food poisoning) and is associated with contaminated poultry products (Similar to Salmonella). I wonder when specifically she developed GBS, was it near Thanksgiving? Stating that the flu shot could cause this is true, but why scare people about the flu vaccine by not giving any information on the more predominant causes to this syndrome? AA.com should really consider hiring a journalist with a scientific background to report on major health issues in a city that has a world leading hospital, instead of internet search reporting giving misleading facts.

MixedStock

Wed, Jan 2, 2013 : 1:54 p.m.

Just a note: a "tracheotomy" is the surgical procedure to create a "tracheostomy." So this young woman has a "tracheostomy" in place that is necessary to help her breathe. I, too, wondered if she had a flu shot and whether her care team feels that point is significant. What does RECENT research have to say about how GBS is triggered by the flu shot, how often it is thought to occur, etc. My best wishes go out to this young woman for a full recovery and to her family as they cope with her absence.

dexterreader

Wed, Jan 2, 2013 : 1:42 p.m.

My thoughts and prayers go out to this family. It makes my burdens look very small after reading their story. I have personally known two people who contracted Guillain-Barre syndrome, one very young and one elderly, so even though it is rare, it's not unheard of. Both recovered eventually. I wish Heather well in her recovery.

Michele

Mon, Mar 18, 2013 : 12:29 p.m.

I am so glad to read that the 2 ppl u knew eventually recovered. I too, now, know 2 ppl who have GBS-both are "older", like in their late 60's. one has just been diagnosed, after having Mono, and the other ended up passing-HOWEVER, that man had many other ailments as well, so it's hard to say if he passed from just that (GBS)

Nadie

Wed, Jan 2, 2013 : 1:39 p.m.

"In some cases, receiving a flu shot has lead to individuals developing Guillain-Barre." Is this the case with this poor woman? I personally know a young woman who got the HPV shot and was paralyzed almost immediately. She could not walk. She began "Nutritional Response Testing" and taking supplements to remove the toxins. She can now walk, although she is not 100%. The damage to her nervous system is not totally reversible. That's why I say www.thinktwice.com

Nadie

Thu, Jan 3, 2013 : 12:39 a.m.

Hmmmm...notice the quote marks around the first sentence of my comment this morning. That quote is no longer in the article.

Nadie

Wed, Jan 2, 2013 : 11:34 p.m.

Maybe not flu shot, another shot. There is no proof that flu shots prevent flu. Read the studies.

Amy Biolchini

Wed, Jan 2, 2013 : 2:50 p.m.

Nadie, Heather Gales did not receive a flu shot prior to getting sick.

Craig Lounsbury

Wed, Jan 2, 2013 : 1:48 p.m.

there certainly are a small number of folks who have an adverse reaction to any vaccine. One never knows where one may fall statistically. But, hypothetically, if getting a shot results in a 1 in 10 million chance I will die from the shot but not getting the shot results in a 1 in 6 million chance I will die from the thing the shot prevents I will take the shot.

mhirzel

Wed, Jan 2, 2013 : 1:33 p.m.

Why does this article not address whether or not Ms. Dagen had a flu shot?

Amy Biolchini

Wed, Jan 2, 2013 : 2:50 p.m.

mhirzel, good point. Heather Gales did not have a flu shot prior to getting sick.