I have Ehlers-Danlos Syndrome Type III - Hypermobility (amongst MANY other things)... my son has it too, and my dad had it and his mom had it (it's autosomal dominant)... you can Google it if you want to know more about it, but basically the genetic structure of collagen in my body is weak so it stretches and tears easily, which means all of my tissues that are made up of collagen (just about everything) are prone to injury and don't heal well.

     In type III the major symptom is in the joints, but there are also skin and organ issues like the others, it's just that each type presents itself in different ways that they used to classify them. Some people with type III also have symptoms of the other types, but the joint issues are prominent.

     My joints hyper-extend and dislocate SUPER easily. When I was a kid they said I was "double-jointed" and acted like it was no big deal, but they didn't know about the disorder back then. I was a tomboy so I got ALOT of injuries, but I was also VERY sensitive to any harassment about being a girl (in other words weak or wimpy) so I just toughed it out and dealt with the pain. Whenever I thought I'd broken something I went to the doctor, but it usually turned out to be sprains.

     When I was on the fire department I got alot MORE injuries of course, and they were just looking for any excuse to kick girls off, so I toughed it out there too. In October of 2000 I fell down the stairs while carrying about 500 pounds of confined space rescue equipment, and my right foot folded under me and I landed on it, severing one of the tendons in my ankle, which made a VERY loud 'POP' that everyone around heard! (I didn't find out it was severed until months later though) I was able to get up and walk on it, and it seemed to move around fine, so I just shook it off. That night after a 2 hour nap, I woke up to the most excruciating pain I ever felt, and had my mom drive me to the hospital. They Xrayed it and said it was "just soft tissue damage" and I'd be fine in about 3 days. So I went back to work.

     I was in so much pain I couldn't sleep. We had our yearly physical agility tests, and I did great on the obstacle course part, but the ladder climb I couldn't get a fast enough time in. I was supposed to climb the aerial ladder 75 feet at 70 degrees, up and back down in 4 minutes. The fastest time I got after several tries was 4 minutes, 23 seconds, and the last attempt I almost fell off. I had no lateral stability in my right ankle because of the injury.

     They took me off the fire crew and made me work fire watch until I could pass the test. Problem with that was it's 8-16 hours a day on your feet on uneven terrain, like sometimes those huge railroad gravel rocks. My pain got worse, still couldn't sleep, my immune system got run down, and by January 2001 I had a sinus infection so bad I went through a whole series of 9 different antibiotics trying to get rid of it.

     I called off work for 2 days and then went back, but was so sick and weak and hurting that after a week back, I just told my Lieutenant "I give up, I can't do this anymore, I'm going home and I just can't come back until I get better."

     I thought it would just take a couple of weeks of rest and I would heal, but it just wasn't happening. I wasn't getting better, and the doctors couldn't figure out why. An orthopedic surgeon told me that I'd completely severed the tendon in my ankle, but he only recommended I take Vioxx for a month and come back to get checked.

     I did what he said, but wasn't getting better. After a couple of months off of work, my employer canceled my insurance. Now I couldn't go to a doctor at all. I had no income of any kind, and I tried filing for my disability insurance, but they were taking forever with the paperwork. They finally sent me a letter saying they needed to see an MRI of my ankle before approving it, only they didn't tell me until AFTER my insurance was canceled. Know how much an MRI costs?? Needless to say I couldn't provide the "evidence" that I was disabled due to my on the job injury, so they turned me down and I got NO money.

     So now I was just stuck. Not able to work. Not able to have medical care. I lived with my mom at the time, so I couldn't get ANY help from the state or federal government because they considered the WHOLE household's income, which included my mom and my brother, even though they were hardly able to cover their own bills, let alone buy medicine for me. My son's father hadn't been paying child support for a long time, so I was getting NOTHING.

     I had to stop taking all medicines. My mom paid for my son's medicine which was $125 a month, but that's all she could afford to help. I couldn't walk most of the time. I had to crawl or lean on furniture to get to the bathroom even. I started gaining alot of weight because I went from being SUPER active to not being able to do anything but lay there. I was so stressed and sleep-deprived that I started having major panic attacks. I thought it was a heart attack at first, which scared me even more. My doctor was nice enough to give me samples of the medicine I needed to take care of that though.

     Finally I figured out that in order to get any kind of help from the government, my son and I would have to move out of my mom's house. I called the local homeless shelter (after ALOT of crying and feeling helpless and hopeless) but they had a SIX MONTH WAITING LIST to get in! I talked to one of my friends, and she agreed to let my son and I move in with her. She was on low income herself, so it wouldn't make us ineligible for assistance like my mom's income had.

     After over a year off of work, I was finally able to get assistance, and was sent to a rheumatologist. Before my appointment I did some research online about my symptoms, and I found only ONE possible thing it could be, so I printed the information about it and took it to my appointment. I explained my situation to him, and the first thing he said was "I think you have Ehlers-Danlos Syndrome"... I said, "that's what I was going to tell you!! Look, I have it here printed out!"

     He sent me to a geneticist to confirm it, and my son was with me at that appointment, so she also checked him, and agreed that what we had was Ehlers-Danlos Syndrome Type III. Finally I knew what was causing all the trouble I'd been having my WHOLE LIFE! It's not curable, and treatable only with anti-inflammatory medications, pain pills, and just avoiding re-injuring things. I have to be careful in ALL that I do.

     My ankles sometimes collapse when I walk. I have carpal tunnel syndrome in my hands because of my wrists dislocating constantly and pinching the nerves. I have the equivalent in my feet, called TARSAL tunnel syndrome because of my ankles constantly dislocating and pinching the nerves. That damage causes my feet to sometimes feel like they're on fire, sometimes like they've got parasthesia (pins and needles like when your blood supply gets temporarily cut off), and sometimes it feels like I'm walking in socks full of broken glass. The neurologist did a test where they send electric shocks through your legs to get your feet and toes to move (which isn't pleasant) and on my right ankle they were freaking out because they were sending MAJOR electricity through me, but it wasn't moving... which confirmed that my tendon was COMPLETELY cut apart... it was no longer attached to anything to pull my foot.

     My hands get similar sensations, and I lose the ability to grip things and sometimes I can't hold a pencil, but so far typing only bothers me minimally. I also get shooting pain from my hands to my elbows that feels like a serious electrical current is zapping me. Sometimes it's just a little "shock" feeling when I touch certain parts near the nerve in my wrist.

     I have osteo-arthritis in ALL of my joints. My major joints (hips and shoulders) OFTEN pinch nerves, and I could be in the middle of walking just fine when I step down and a nerve is pinched and I'm instantly crippled until it works itself out. Sometimes it takes a few minutes, sometimes a few days.

     When I was pregnant with my son in 1994 (before I knew about the EDS) the bottom of my spine curved so severely that I have a permanent pinched nerve at about T-11 and T-12. Sometimes it gets crushed when I'm sleeping, and when I wake up, I'm literally paralyzed from the chest down until I can get myself rolled into another position and it loosens itself out. I wake up several times throughout the night because some joint or another is pinching a nerve, so I have to readjust the way I'm laying.

     I also found out that the EDS causes spontaneous rupture of the uterus (which leads almost immediately to death) during pregnancy. The geneticist, rheumatologist and my gynecologist all said it is probably why my son was born a month early. My body couldn't handle any more pressure on the uterus, and it HAD to get him out or it would rupture. I can't have any more kids because the risk of dying from uterine rupture is too great. I also got a torn muscle in my abs while I was pregnant because of the stretching (and he wasn't even very big, geez!) It took almost 10 years to heal, and until then every time I tightened my abs it felt like a knife stabbing me in the spot where it tore.

     My right shoulder was injured back when I was in high school... they told me it was a rotator cuff injury caused by all my years of playing baseball and football. I used to be able to throw a softball from deep center field to home plate without exerting much effort, but now I'm lucky to get it from the pitcher's mound to home plate, because so much stuff is torn in there it just doesn't mechanically work that way anymore. They told me back then it would heal in a few months, but it never did... now we know why.

     The EDS has also caused me to be prone to MANY other injuries, and since I was working my body so hard all those years, I got lots of them. I have permanent plantar fasciitis and sesamoiditis in my feet too. It's from overuse of the tendons in the feet, and in normal people it heals with a few months rest, but for me the tendons are permanently damaged.

     My finger and toe joints also dislocate, and pinch nerves just like the others. It hardly takes any resistance at all to dislocate and hyper-extend them, so it happens often, and sometimes I have to just not move them until it works out or else it's EXTREMELY painful.

     I've gained about 100 pounds since I had to quit the fire department, because of not being able to be as active, and it's been nearly impossible to exercise enough to work it off. Just limiting calories isn't working. The extra weight is making my joints hurt worse, so I'm trying SO hard to get it off, but it's just not happening. I can swim, but my heart rate doesn't get up high enough and stay high long enough to burn much calories. Also the water resistance alone is enough to pull my joints apart, so even though I'm floating and none of my body weight is on them, all of my movements are happening with my shoulders, wrists, hips, knees and ankles in dislocated position. I can only do gentle walking on the treadmill and lift light weights, and even that much takes ALOT of effort and is extremely painful. I have to have 2 days of rest between weight lifting days for my muscle fibers to heal.

     I went back to work part time as soon as I was able, and a few months ago it became necessary to work more hours to help support my mother, because she's been going blind for a few years and hasn't been able to work. She had a cornea transplant that left her in worse condition than she was before. The extra hours have been very emotionally rewarding, because I love my job, but it's really taking a toll on my body.

     For about two months now I've been having EXCRUCIATING pain all over, but beyond description in my left knee. I need to stay off of it, but I can't because my mom HAS to have that extra money or she'll lose her house. I spend almost 100% of the hours that I'm not working out or working laying in bed with my legs propped, constantly changing positions to suit my joints, trying to rest them. That's why you see me on Zorpia alot. My waking hours that I'm laying down, I'm on here.

     Sometimes the pain is so bad that I pass out asleep for several hours when I get home from work. Sometimes it's so bad the tears pour out and I can't stop them. Sometimes it hurts so bad I puke. I compare it to childbirth, and in all honesty, childbirth was nothing compared to this. Childbirth was just like menstrual cramps from Hell for a few hours then it was over. This is ALL the time. It's never gone, and I never have full use of my body. Imagine feeling like you're being stabbed and electrocuted all over your body constantly throughout the day, throw in a little bit of inability to get your body to move the way it should no matter how hard you try and you'll know how I feel. I used to refuse to take my pain medicine unless I felt like I was dying, and my meds usually expired before I'd get halfway through the bottle, but now with working these extra hours, I've had to take 2-4 pain pills a day (still under the allowed dosage, don't worry, and they're non-addictive.)

     I went to the doctor the other day, and he gave me an extra medicine to help with the inflammation and pain, and he said if I'm not hurting less in a month, I'm going to have to have surgery on my knee. Problem with that is that the EDS causes me to not heal properly, so I would be off work for a LONG time before it'd be healed enough to work again. My mom can't afford that. Also the effects on the skin and tissue healing mean they have to use a special type of suture using a special stitch pattern, or else adhesive to close my wounds, and it stays an open wound about 3 times longer than a normal person. Plus if I couldn't workout for that long, I'd probably gain another 50 pounds and end up bedridden.

     That's what happened to my dad's mom. She had her worst problems with her hips, so they did a hip replacement surgery (not knowing about the EDS)... it didn't help, so they did it AGAIN. She was immobile for so long she put on alot of weight, then the hip still wasn't better, and it couldn't support her weight, so she spent about the last 20 years of her life in a hospital bed in her bedroom. They had to put a portable toilet in there, and she had to have help bathing. I don't want to end up like that!

     I think that's about all there is to tell about the Ehlers-Danlos Syndrome. Feel free to ask me any questions. I also have a huge list of other problems that may or may not be caused/affected by the EDS: TMJ, ADD, IBS, hiatal hernia with ulcerated esophagus, polycystic ovarian syndrome, my EDS-weakened blood vessels in my face ruptured from suntanning so now my cheeks are always red, I had a tonsil rupture and half of it was dangling down my throat once before they finally took them out when I was 25, I have scars all over me even from minor scratches, I have SEVERE allergies all year, and chronic bronchitis and sometimes asthma because of it, and I have sleep apnea which I've had ALL MY LIFE (not because of my weight, which happens in SOME cases, but not mine.) The doctor said my blood tests consistently show two proteins that are so high they're through the roof... one of them indicates allergic reactions, the other indicates inflammation (like arthritis). I used to donate blood regularly, but they won't accept my blood anymore because they can't accept the "inflammation" protein being so high.

     My son has some of the same problems with dislocation and pain, but we found out early enough with him that we've been able to be very careful not to cause injuries, so he should be able to go MUCH longer in his life before having problems like mine. He WILL pass this on to his children though. I'm not sure if it will only be to his daughters or if the sons can get it from him too, but in my family it has gone girl to boy to girl to boy through the generations, and my two brothers didn't get it from my dad, only me. I also don't know if the boys are then carriers or not, because they currently don't have a DNA test for that yet. Hopefully they will have a cure or treatment by the time my grandchildren come.

This morning I recalled how Halloween was one of my favorite holidays growing up. Today Halloween isn't so happy for me.

This morning my mom was spending the night at her cousin's house, and they woke up to a bunch of fire trucks across the street. My mom related me the story of watching them for a few hours out the window, wondering what was going on, but it didn't seem to worry me too much.

This evening after Trick-or-Treating was over, my mom was telling my brother about it, and her cousin had called and said that the newspaper reported that there had been a fatality in the fire, and she asked me if I knew anyone with the last name of Hanna, and then it hit me... my friend Larry and his family live across the street from my mom's cousin, I just hadn't thought about that when she'd told me earlier.

My friend Larry, and very sweet man who loved his wife and son, loved video games, and was just an overall sweet guy... is dead at age 42.   :(

The news reports don't have much information, so I will be updating this journal as more info becomes available... for now, here are links to the current news reports:

 
Photo: Man found dead after early morning house fire

A man was found dead today at the scene of a house fire in the 300 block of South 23rd Street in Porter.

As of deadline the name of the victim had not been released, but after the Tribune went to press Porter Police identified the deceased as Laurence T. Hanna, 42. An autopsy was scheduled for this afternoon in South Bend.

Porter Fire Chief Lewis Craig was at the scene of the fire this morning, was unable to speak to the Chesterton Tribune, and did not return a call.

The Porter County Fire Investigation Strike Team (FIST) and a State Fire Marshal were also at the scene, but FIST Director Jim Branham said that the investigation was still in its early stages and that no information about the cause of the fire was yet available.

This much is known, however. At 3:58 a.m. both the Porter and Chesterton fire departments were toned out under an automatic aid agreement between the two.
Under the terms of that agreement, the PFD responds automatically to any structure fire in the Town of Chesterton, and the CFD is supposed to respond automatically to any structure fire in the Town of Porter.

For some time, though, perhaps as long as two years, and at Craig’s specific request, the CFD has not, per the agreement, responded automatically to structure fires in Porter, Chesterton Fire Chief Warren “Skip” Highwood told the Tribune. Instead, Highwood said, the CFD remains on standby at its station until Craig formally asks for assistance.

Today Craig did ask for assistance, at 4:10 a.m., 12 minutes after the initial tone-out.

A Chesterton firefighter, who asked not to be named, said today that there is no way of knowing whether this morning’s fatality could have been prevented had the CFD not been instructed previously to wait on standby. But, he said, fires can double in size every 30 seconds. “Would that have made a difference in the fatality or not? I don’t know. But it can make a difference in the size of a fire.”

“We can respond anywhere in Porter,” the Chesterton firefighter said. “We can beat them there. It’s not a race. We’re talking about lives. We’re talking about property. We’re all in this together.”

Highwood did say that the PFD automatically responds to every structure fire in Chesterton and does not wait on standby for a request for assistance.

Porter Town Council President Bill Sexton was unaware of the fatal fire when contacted this morning. Nor, Sexton said, had he been advised of the specifics of the automatic aid agreement. “Under the circumstances I’m not comfortable with that,” he said. “I would like to find out more about what happened this morning. . . . Without that it’s hard for me to comment. I guarantee I’ll be making some phone calls this morning. We need to get to the bottom of what happened.”

“At any time that the life of a person is threatened in or near the Town of Chesterton’s borders, and the Town of Chesterton can render assistance to protect person and belongings, I would be more than happy to offer assistance in any shape, way, or form,” Chesterton Town Council President Dave Cincoski said. “And I would be happy to direct the various department heads to assist.”

Posted 10/31/2007