Today is rare disease day. Ehlers-Danlos syndrome is classified as a rare disease, with an incidence of approximate 1 in 10,000 (depending on which type you have, what study you read, etc). There are literally thousands of these diseases that, because they are rare, receive little recognition and even less funding for research. As a scientist, I know as well as anyone that money only goes to popular causes. Until we find more scientists, research centers and funding sources willing to invest is researching these diseases, any advance in diagnosing, treating or curing will be by pure luck. Just because these diseases don't affect millions of people doesn't mean that they don't need to be cured.
Just my two cents, as a mother, patient and geneticist.
Wednesday, February 29, 2012
Saturday, February 25, 2012
To appease your curiosity
Why is Mika getting a service dog? I'm asked that every time the term service dog comes up. There are many reasons, most of which I won't discuss outside of the family. However, we are willing to discuss two of the main reasons.
1. Ehlers-Danlos Syndrome- My daughter inherited a rare genetic disorder from me. To keep it very simple, we have defective connective tissue. Every part of your body uses connective tissue to keep body parts where they are supposed to be and functioning effectively. When you have EDS, your connective tissue isn't strong and firm, it's highly elastic. What does this mean? Joints that easily dislocate, skin that tears through stitches and stretches, significant pain, early onset arthritis and easy bruising (among many other things). There are 7 different types of EDS and some of them are very severe, so we are lucky to have a type that is not usually associated with spontaneous organ/aorta ruptures.
2. Brittle bones- Mika has a history for bones that break for no discernible reason. Of all of her fractures, we know what caused 4 of them. How bad is it? In the last 17 months, she's broken her foot, nose, finger (twice), collarbone, and her nose again. On an upside, the last time she broke her nose, she actually straightened the bend left from the previous break! Hey, you take what you can get. They haven't yet pegged the exact cause of her brittle bones, but there are three main theories floating around her specialists.
Now you know why a service dog will be so helpful for my daughter. Not only can it help when she's in a sling, backbrace or on crutches, it can also help comfort her through the pain of broken bones and dislocated joints. If only we could have gotten him/her before she broke both her nose and collarbone within the past 5 weeks....
1. Ehlers-Danlos Syndrome- My daughter inherited a rare genetic disorder from me. To keep it very simple, we have defective connective tissue. Every part of your body uses connective tissue to keep body parts where they are supposed to be and functioning effectively. When you have EDS, your connective tissue isn't strong and firm, it's highly elastic. What does this mean? Joints that easily dislocate, skin that tears through stitches and stretches, significant pain, early onset arthritis and easy bruising (among many other things). There are 7 different types of EDS and some of them are very severe, so we are lucky to have a type that is not usually associated with spontaneous organ/aorta ruptures.
2. Brittle bones- Mika has a history for bones that break for no discernible reason. Of all of her fractures, we know what caused 4 of them. How bad is it? In the last 17 months, she's broken her foot, nose, finger (twice), collarbone, and her nose again. On an upside, the last time she broke her nose, she actually straightened the bend left from the previous break! Hey, you take what you can get. They haven't yet pegged the exact cause of her brittle bones, but there are three main theories floating around her specialists.
Now you know why a service dog will be so helpful for my daughter. Not only can it help when she's in a sling, backbrace or on crutches, it can also help comfort her through the pain of broken bones and dislocated joints. If only we could have gotten him/her before she broke both her nose and collarbone within the past 5 weeks....
And the shopping continues....
I'm determined to get all of the required dog stuff before my tax return is gone, so we went to PetCo and PetSmart today. The dogs are all fed one specific type of food, and it is not the cheap stuff. The good news is that PetSmart had the big bags on sale, so we went to get a bag. The 35 lbs bags were on sale for $39, which is really expensive to me. We next adjourned to Target where we spent 10 minutes debating the merits of plastic vs metal bowls. Honestly, we're going to have a highly trained, intelligent dog and we are worried that seeing his reflection in the bottom of his water bowl would scare him. That doesn't even include the extra 5 minutes spent wondering if the dog would too afraid to drink from a self-refilling bowl.
Fortunately, someone already warned me to make sure the dog food is kept in a sealed container, so we got a huge one to avoid very nasty surprises later. And, because our dog is going to be spoiled, we got two boxes of dog treats. Just in case.
Total so far: $120 for cage, food, treats, bowls and food container. This is more expensive than I thought it would be. If I was still at my part time job I would be very hard pressed to afford any of this. I'm sure everyone who owns a dog thinks this is self explanatory, but it's a surprise to me!
Fortunately, someone already warned me to make sure the dog food is kept in a sealed container, so we got a huge one to avoid very nasty surprises later. And, because our dog is going to be spoiled, we got two boxes of dog treats. Just in case.
Total so far: $120 for cage, food, treats, bowls and food container. This is more expensive than I thought it would be. If I was still at my part time job I would be very hard pressed to afford any of this. I'm sure everyone who owns a dog thinks this is self explanatory, but it's a surprise to me!
Friday, February 24, 2012
One step closer
I just ordered our dog kennel today!!! CA requests that the cages be at least 36" tall. I went to our local pet stores and they were over $100. That is way beyond my price range, so I visited my friend Amazon. I found a 42" kennel for $58, with free shipping. Yes, that's still a bunch of money, but that's about half of what our local PetCo and PetSmart wanted.
The real question is where are we going to put this kennel? This kennel is HUGE, and we live in an apartment. We could put the kennel in the dining room and get rid of the table. Of course, that means we'd have to get a board, rest it on top of the kennel and eat that way. Or we could remove a sofa, put the kennel in it's place and just let Mika sit on top of the cage.
The real question is where are we going to put this kennel? This kennel is HUGE, and we live in an apartment. We could put the kennel in the dining room and get rid of the table. Of course, that means we'd have to get a board, rest it on top of the kennel and eat that way. Or we could remove a sofa, put the kennel in it's place and just let Mika sit on top of the cage.
the triology ends
This is the third, and final, installment of the background trilogy. Hang in there, we're almost done!
After being unable to find a full time job locally, I accepted a full time job in Texas in October. I called Canine Assistants about a month before the move to update the information in our folder. In true irony, they were going to call me that day to tell me that they finally found a sponsor for the dog! I was so excited I did a happy dance at my desk! Then came the bad news. There was going to be a big award presentation and it was scheduled 1 week AFTER we were to move. What are the odds?!?! After much negotiating and going back and forth, the date was moved up to 4 days before we move, which raised my stress level to stroke level.
I had never heard of any sort of presentation ceremony with the sponsor, so I called CA at least three separate times to ask questions. The local business that sponsored us, in conjunction with CA, sent out notices to all the area newspapers and news stations. So we would be standing in front of a whole group of complete strangers along with journalists who would be staring at us like a freak show. And because my daughter doesn't usually "look disabled" that would lead to a lot of rude questions. One thing I've learned quickly is that if you have (or mention) a service dog, people feel they have the right to ask rude, invasive questions about your health. If someone asks a question with no intent of being rude, snoopy or obnoxious, I will usually answer them with whatever form response we have. Lately, we've settled on "She has brittle bones, so they break easily." This is not a complete answer by any means, but it's an vague answer that most people can understand. If someone is being pushy, rude or jerkish in general I will say something along the lines of "I'm sorry, I don't believe it talking about my daughter with strangers." That has stopped everyone so far, but if there ever comes a time someone persists I'll get to be more rude and say things like "Why are you staring at my kid? Are you some sort of pervert, trying to follow my kid around? I swear, I'm calling the cops if you don't leave within 5 seconds."
Okay, back to the presentation. I had to flat out force my daughter to go to the presentation. Frankly, I dreaded it more than she did, but I wasn't dumb enough to tell her that. I tried to come up with best case scenarios and talk about that with Mika. Because I pulled her from school just for the presentation, we were in jeans and a nice shirt. I thought it would be an informal thing, but it turns out the people running the show were in dress suits! I felt like a moron. To make a VERY long story short, all the store employees were there, as was the general manager, the representative from Milk Bone and a rep from Canine Assistants. And, to my horror, there were journalists from all the news stations and newspapers for a 50 mile radius. I loathe being the center of attention, but Mika was in tears because everyone was staring at her. It took a little manuerving but I end up dealing with all the journalists on one side of the room and Mika was with the visiting service dog and the rep from CA. All of the journalists except one were complete gentlemen, asking questions without demanding personal information about our lives or Mika's medical history. There was one reporter from a local news station that was a jerk. He kept asking the same dang question over and over! He managed to annoy me, the store manager, the Milk Bone rep and the CA rep in 10 minutes. He was the one to ask to interview Mika and kept asking her over and over "So how hard is it going to be to have to wait another year to get your dog?" Mika replied that it was hard, but she could be patient because she knew it was coming soon. The second, third and fourth time he asked it, I answered for her. All of the other journalists looked like they wanted to smack the man. At the end of the two hours, we had a huge fake check from the sponsor that was used for the photos, a cake that was made to feed 75, the promise of a service dog, a pissed of mom and a traumatized kid and service dog-in-training.
That event was a nightmare for me. I'm a pretty private person overall. I'm sure that surprises some people, given that I can talk a mile a minute, but very few people actually know the details of our lives. I had to open up a part of our lives for everyone to see, which is so very very very hard. I was truly scared of what the articles and reports would say, because they would be seen or read by most of the people we know. Before I even had a chance to read/see them I had calls from friends telling us congrats on the dog. Everyone was so supportive! I honestly expected flack from people, but I completely underestimated our community. My daughter was really concerned about what the kids at school would do when they saw it, like most 12 year olds would be. Instead of teasing her, all of the kids were amazingly supportive. Even kids she didn't know well came up to her and told her congrats on getting a service dog and asked her if she would bring it so school.
I thought we wouldn't get the dog for at least another year. A few days after the presentation Francis from CA (I love that woman) called and said we could go to a training camp at the end of March 2012 or January 2013. It wasn't hard to decide on the March camp. That means taking Mika out of school for two weeks, which is bad. Because I've only been at my job since November, I'll have to take the two weeks off unpaid because I can't use vacation and I don't qualify for FMLA. Yes, that's a lot of bad, but the end result will be so very worth it.
Ultimately, the whole reason we were willing to do a public presentation and why I'm writing this blog is to help people. There are so many people out there who don't know about service dogs that aren't seeing eye dogs. There are even more people who erroneously believe that if you don't look horribly disfigured, then you can't have any type of disability. This is so very very untrue. So even though it's hard to bare my soul and open up our private journey, if I can reach just one person, this will all be worth it.
After being unable to find a full time job locally, I accepted a full time job in Texas in October. I called Canine Assistants about a month before the move to update the information in our folder. In true irony, they were going to call me that day to tell me that they finally found a sponsor for the dog! I was so excited I did a happy dance at my desk! Then came the bad news. There was going to be a big award presentation and it was scheduled 1 week AFTER we were to move. What are the odds?!?! After much negotiating and going back and forth, the date was moved up to 4 days before we move, which raised my stress level to stroke level.
I had never heard of any sort of presentation ceremony with the sponsor, so I called CA at least three separate times to ask questions. The local business that sponsored us, in conjunction with CA, sent out notices to all the area newspapers and news stations. So we would be standing in front of a whole group of complete strangers along with journalists who would be staring at us like a freak show. And because my daughter doesn't usually "look disabled" that would lead to a lot of rude questions. One thing I've learned quickly is that if you have (or mention) a service dog, people feel they have the right to ask rude, invasive questions about your health. If someone asks a question with no intent of being rude, snoopy or obnoxious, I will usually answer them with whatever form response we have. Lately, we've settled on "She has brittle bones, so they break easily." This is not a complete answer by any means, but it's an vague answer that most people can understand. If someone is being pushy, rude or jerkish in general I will say something along the lines of "I'm sorry, I don't believe it talking about my daughter with strangers." That has stopped everyone so far, but if there ever comes a time someone persists I'll get to be more rude and say things like "Why are you staring at my kid? Are you some sort of pervert, trying to follow my kid around? I swear, I'm calling the cops if you don't leave within 5 seconds."
Okay, back to the presentation. I had to flat out force my daughter to go to the presentation. Frankly, I dreaded it more than she did, but I wasn't dumb enough to tell her that. I tried to come up with best case scenarios and talk about that with Mika. Because I pulled her from school just for the presentation, we were in jeans and a nice shirt. I thought it would be an informal thing, but it turns out the people running the show were in dress suits! I felt like a moron. To make a VERY long story short, all the store employees were there, as was the general manager, the representative from Milk Bone and a rep from Canine Assistants. And, to my horror, there were journalists from all the news stations and newspapers for a 50 mile radius. I loathe being the center of attention, but Mika was in tears because everyone was staring at her. It took a little manuerving but I end up dealing with all the journalists on one side of the room and Mika was with the visiting service dog and the rep from CA. All of the journalists except one were complete gentlemen, asking questions without demanding personal information about our lives or Mika's medical history. There was one reporter from a local news station that was a jerk. He kept asking the same dang question over and over! He managed to annoy me, the store manager, the Milk Bone rep and the CA rep in 10 minutes. He was the one to ask to interview Mika and kept asking her over and over "So how hard is it going to be to have to wait another year to get your dog?" Mika replied that it was hard, but she could be patient because she knew it was coming soon. The second, third and fourth time he asked it, I answered for her. All of the other journalists looked like they wanted to smack the man. At the end of the two hours, we had a huge fake check from the sponsor that was used for the photos, a cake that was made to feed 75, the promise of a service dog, a pissed of mom and a traumatized kid and service dog-in-training.
That event was a nightmare for me. I'm a pretty private person overall. I'm sure that surprises some people, given that I can talk a mile a minute, but very few people actually know the details of our lives. I had to open up a part of our lives for everyone to see, which is so very very very hard. I was truly scared of what the articles and reports would say, because they would be seen or read by most of the people we know. Before I even had a chance to read/see them I had calls from friends telling us congrats on the dog. Everyone was so supportive! I honestly expected flack from people, but I completely underestimated our community. My daughter was really concerned about what the kids at school would do when they saw it, like most 12 year olds would be. Instead of teasing her, all of the kids were amazingly supportive. Even kids she didn't know well came up to her and told her congrats on getting a service dog and asked her if she would bring it so school.
I thought we wouldn't get the dog for at least another year. A few days after the presentation Francis from CA (I love that woman) called and said we could go to a training camp at the end of March 2012 or January 2013. It wasn't hard to decide on the March camp. That means taking Mika out of school for two weeks, which is bad. Because I've only been at my job since November, I'll have to take the two weeks off unpaid because I can't use vacation and I don't qualify for FMLA. Yes, that's a lot of bad, but the end result will be so very worth it.
Ultimately, the whole reason we were willing to do a public presentation and why I'm writing this blog is to help people. There are so many people out there who don't know about service dogs that aren't seeing eye dogs. There are even more people who erroneously believe that if you don't look horribly disfigured, then you can't have any type of disability. This is so very very untrue. So even though it's hard to bare my soul and open up our private journey, if I can reach just one person, this will all be worth it.
Thursday, February 23, 2012
Part Two
Part 2:
The good news was that we were officially approved for a service dog. The bad news was that there is a crazy long wait. When you are approved, you are put on either the priority list or the regular list. Some people go directly to the priority list without ever making the regular list. These are the people who need a dog sooner than later, usually for life threatening/ending diseases. When you consider that, it's not so bad to be sent to the regular list.
After a year's wait on the regular list, CA contacted me and arranged to set up a home visit. I wasn't sure what to expect from a home visit and I frantically worked on cleaning the house from top to bottom. I felt like my house needed to be perfect to convince them that the dog would be happy in our small townhouse. This poor woman flew from Georgia to Iowa in mid-January. Of course, it was one of those days that the high temp never gets above 0 and the temp in Atlanta was in the upper 60s. She was very nice and had a good sense of humor about the huge temperature difference. Once she was in our home she never once left the living room, despite my repeated offers to show her around. It turns out that the home visit isn't an inspection of your home, but a way to meet the family and assess the living situation. She asked questions about what type of dog we were looking for as far as energy levels and temperament. She talked about some of the things to expect when we first receive the dog and when we first come home. She said that the mandatory home visits was a new requirement, and was the direct result of a situation with a service dog. I can only imagine what happened. Was the dog abused? Locked outside? Was the home violent or unsanitary? It must have been bad to cause a universal change in policy.
After the home visit was concluded, we were officially moved onto the priority list. Mika was only on the 'regular' waiting list for one year, which is pretty short, all things considered. The priority list is where the candidates to get a dog are chosen from, so once you're on there it's a good sign. The bad news was that it's still 1-3 year wait on average. It was really hard to explain that to my 10 year old in a way she would understand. 1-3 years is a long time to hope for a dog without being able to plan on getting one at all. The reason we had a long wait, it turns out, is because of the sponsor issues.
CA partners with corporate sponsors to help cover the cost of raising and training the dog. In addition to their main partners like Delta and MilkBone, they try to find local sponsors near the recipient's home to contribute. I'm sure this wouldn't be that much of a problem in large metropolitan areas, but it's a significant issue in the Heartland. We spent about 20 months waiting until a local sponsor could be found. It was a long wait and at times, Mika would alternate between feeling hopeless about ever getting a dog and feeling angry enough to not want a dog. There were many situations that the service dog would have been a huge benefit, but there was nothing we could do about it. It's nobody's fault, that's just how things work out.
Okay, I've killed enough time at work. I'll finish the background stuff next time.
The good news was that we were officially approved for a service dog. The bad news was that there is a crazy long wait. When you are approved, you are put on either the priority list or the regular list. Some people go directly to the priority list without ever making the regular list. These are the people who need a dog sooner than later, usually for life threatening/ending diseases. When you consider that, it's not so bad to be sent to the regular list.
After a year's wait on the regular list, CA contacted me and arranged to set up a home visit. I wasn't sure what to expect from a home visit and I frantically worked on cleaning the house from top to bottom. I felt like my house needed to be perfect to convince them that the dog would be happy in our small townhouse. This poor woman flew from Georgia to Iowa in mid-January. Of course, it was one of those days that the high temp never gets above 0 and the temp in Atlanta was in the upper 60s. She was very nice and had a good sense of humor about the huge temperature difference. Once she was in our home she never once left the living room, despite my repeated offers to show her around. It turns out that the home visit isn't an inspection of your home, but a way to meet the family and assess the living situation. She asked questions about what type of dog we were looking for as far as energy levels and temperament. She talked about some of the things to expect when we first receive the dog and when we first come home. She said that the mandatory home visits was a new requirement, and was the direct result of a situation with a service dog. I can only imagine what happened. Was the dog abused? Locked outside? Was the home violent or unsanitary? It must have been bad to cause a universal change in policy.
After the home visit was concluded, we were officially moved onto the priority list. Mika was only on the 'regular' waiting list for one year, which is pretty short, all things considered. The priority list is where the candidates to get a dog are chosen from, so once you're on there it's a good sign. The bad news was that it's still 1-3 year wait on average. It was really hard to explain that to my 10 year old in a way she would understand. 1-3 years is a long time to hope for a dog without being able to plan on getting one at all. The reason we had a long wait, it turns out, is because of the sponsor issues.
CA partners with corporate sponsors to help cover the cost of raising and training the dog. In addition to their main partners like Delta and MilkBone, they try to find local sponsors near the recipient's home to contribute. I'm sure this wouldn't be that much of a problem in large metropolitan areas, but it's a significant issue in the Heartland. We spent about 20 months waiting until a local sponsor could be found. It was a long wait and at times, Mika would alternate between feeling hopeless about ever getting a dog and feeling angry enough to not want a dog. There were many situations that the service dog would have been a huge benefit, but there was nothing we could do about it. It's nobody's fault, that's just how things work out.
Okay, I've killed enough time at work. I'll finish the background stuff next time.
Monday, February 20, 2012
In an effort to keep this from becoming a War and Peace post, I'm going to break the back story up into parts. This 1st post covers the application process to get approved for a service dog.
I started researching service dogs for my daughter in the spring of 2009. I spent hours online trying to find a company that trained dogs in a way that could help Mika. The more research I did, though, the more disheartened I became. Service dogs are so expensive!!! There is no possible way that I could pay $20,000 for a service dog. I bet that the vast majority of people who need a service dog can't afford that amount of money. That's what brought me to Canine Assistants. They have private and corporate sponsors that will cover the entire training costs. There is a very long waiting list (as you can imagine), but after much internal debate, I started the process of applying.
In the fall of 2009, I applied on behalf Mika's to Canine Assistants for a service dog. The application process is long and complicated, and not for the faint of heart. I filled out forms about my daughter's health, personality, energy levels, school experiences and more. There were forms about me, our living environment and my expectations for the dog. I had reference forms to be filled out by her physician, teacher and after school sitter. There were detailed forms for the physicians to fill out. I don't blame them in any way for all of the paperwork. In fact, I'm glad they do it. By the time they called me 6 weeks after the papers were submitted, they already had a good idea about who we were and what challenges we face in our day to day lives.
I remember being so incredibly nervous about the phone call. Sometimes it feels like I'm constantly fighting to have Mika included, or to keep things on an even playing field for her. Do you know how many times I've gone toe to toe with someone about their trying to feed her a food they KNOW she's allergic to? How many times I've told a doctor they're an idiot or I-told-you-so when a specialist tells the doctor what I've been saying for 3 months? I don't know why I thought I would have to convince CA that Mika would benefit from a service dog. They never once even suggested any such thing. I guess it was just so important to me that they take her needs seriously, I was ready to actively convince them if necessary. During our conversation I answered the few questions they had. When they asked if I had any questions, I blurted out "Does this mean she qualifies for a dog?" I could feel the woman smile through phone and she said "Aimee, her physicians felt that she would benefit from a service dog and we completely agree." I nearly burst into tears at hearing that. Heck, I'm getting goosebumps now just typing this. I can't explain what it's like to hear that.
I started researching service dogs for my daughter in the spring of 2009. I spent hours online trying to find a company that trained dogs in a way that could help Mika. The more research I did, though, the more disheartened I became. Service dogs are so expensive!!! There is no possible way that I could pay $20,000 for a service dog. I bet that the vast majority of people who need a service dog can't afford that amount of money. That's what brought me to Canine Assistants. They have private and corporate sponsors that will cover the entire training costs. There is a very long waiting list (as you can imagine), but after much internal debate, I started the process of applying.
In the fall of 2009, I applied on behalf Mika's to Canine Assistants for a service dog. The application process is long and complicated, and not for the faint of heart. I filled out forms about my daughter's health, personality, energy levels, school experiences and more. There were forms about me, our living environment and my expectations for the dog. I had reference forms to be filled out by her physician, teacher and after school sitter. There were detailed forms for the physicians to fill out. I don't blame them in any way for all of the paperwork. In fact, I'm glad they do it. By the time they called me 6 weeks after the papers were submitted, they already had a good idea about who we were and what challenges we face in our day to day lives.
I remember being so incredibly nervous about the phone call. Sometimes it feels like I'm constantly fighting to have Mika included, or to keep things on an even playing field for her. Do you know how many times I've gone toe to toe with someone about their trying to feed her a food they KNOW she's allergic to? How many times I've told a doctor they're an idiot or I-told-you-so when a specialist tells the doctor what I've been saying for 3 months? I don't know why I thought I would have to convince CA that Mika would benefit from a service dog. They never once even suggested any such thing. I guess it was just so important to me that they take her needs seriously, I was ready to actively convince them if necessary. During our conversation I answered the few questions they had. When they asked if I had any questions, I blurted out "Does this mean she qualifies for a dog?" I could feel the woman smile through phone and she said "Aimee, her physicians felt that she would benefit from a service dog and we completely agree." I nearly burst into tears at hearing that. Heck, I'm getting goosebumps now just typing this. I can't explain what it's like to hear that.
A leap of faith
I've been thinking about doing this for a long time. I'm not sure anyone will actually read this, but it's going to be worth it if even one person learns from our journey. We are less than a month away from traveling to Georgia to meet my daughter's service dog. It's been a long, complicated process, but the end is in sight.
I have never had a blog and I have no real idea what I'm doing. I hope that spending hours on Wikipedia and "the google" will help make me at least proficient. I would prefer not to embarrass myself in front of the billions on the internet. Not that it hasn't happened before, but I do try to minimize that if possible.
I have never had a blog and I have no real idea what I'm doing. I hope that spending hours on Wikipedia and "the google" will help make me at least proficient. I would prefer not to embarrass myself in front of the billions on the internet. Not that it hasn't happened before, but I do try to minimize that if possible.
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