Kayla's Fight For Her Life With CRPS

$9,542 of $20,000 goal

Raised by 187 people in 10 months

My name is Kayla Hansen and a year and a half ago my life was changed forever. For those that know me you know that I love to work and have a ton of passion for my career of managing restaurants. Dec. 27th 2015 I went in to work just like every other day not knowing my life as I knew it was soon to be over. I unfortunately got my hand slammed in between two doors and initially just thought my hand was broken. After 2 months of the swelling not going down, and my arm feeling like it was on fire I was given the diagnosis that I had complex regional pain syndrome also known as CRPS. It is extremely rare and is literally rated the most painful thing In the world. More painful than childbirth, amputation, or any cancer there is. It is an autoimmune disease that effects every single part of your body including organs. Your body can no longer control temperature and it literally feels like you are being burned alive 24/7. Along with the burning there are a million other symptoms, your brain tells every part of your body that it is hurting. It affects your bones,muscles,every nerve in your body, body tissue and all organs. Some people are lucky and the disease stays contained In just one limb. However I am very unlucky and mine has spread from my head to my toes in just over a year. I have seen over 50 doctors and they all say mine is the worst case they've ever seen. My condition is so bad that I'm literally being burned alive. Both of my arms from my shoulders down to my hands are covered in serious burns that start from the inside out. The burns are so serious that I have been hospitalized numerous times because if I were to get an infection I'd easily lose my arms. I am starting this go fund me for numerous reasons.... the first being the costs of all my treatments. In a little over a year I've had over 40 surgeries and procedures. I am already so far in debt but still fighting and refuse to give up. I leave april 8th to travel to arkansas to see a specialty doctor in my disease. There are only 4 doctors in the world that do what she does. I have to stay there for up to 14 weeks.. Between room and board and treatments it will costs thousands a week. There is no cure for this disease but I am hoping that I can at least get some relief. I went from living on my own being a hardworking 28 year old, to now I have to live with my parents and I'm completely dependent on them. I can't drive, I can't work, I can't even take a bath or wash my hair by myself. The other reason I am starting this account is I DESPERATELY WANT TO SPREAD THE WORD OF THIS AWFUL DISEASE. Although it is very rare we need to spread the word and make it so the whole world is informed of this condition.. It can happen to anyone at anytime. It is brought on by a trauma or a surgery. It is known as the suicide disease because up to 40% of people with this disease kill themselves because the pain is so incredibly unbearable most cannot live with it. I understand everyone has their own issues and money problems but even if you cannot donate PLEASE PLEASE SHARE THIS ACCOUNT SO THE WORLD CAN BE INFORMED OF THIS TERRIBLE DISEASE AND MAYBE ONE DAY FIND A CURE.

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I haven't done a update on here in quite some time and with that being said there are some things I want to get off my chest. People who keep commenting telling me " you don't have to go to Italy for certain trials, you don't have to have money all over the US they are doing said trials for free. YES that may be the case for someone who has CRPS IN ONE LIMB OR NOT VERY SEVERE. Do y'all think i haven't tried my hardest to get into any and every trial I could??? I have been turned down more times than I could possibly count. Because trials are all about making their numbers look good so that their drug gets approved. No one and I mean NO ONE will take a patient like me who has CRPS from head to toe, has burns all over my body from the severity of my CRPS and now currently has 4+ organs that are involved. My life is a living nightmare every single day. Doctors say they are out of options....that they dont know what else they can do or try... I saw a new specialist just last week that said he never would have dreamt in his 30+ years of studying and seeing this disease that he would have ever seen someone in real life that had this condition as severe as mine. His jaw about hit the floor when we walked into the room...he said he's read about people like me in medical journals but never thought he'd see a patient actually this severe. Do you know how disheartening it is to be told over and over you are the worst case doctors have ever seen? It doesn't matter if I see a neurologist, a pain specialist, a dermotoligist, burn care or wound care specialist, internal medicine, the list could go on and on..... It would have been easy to give up months and months ago. But I'm a fighter and I want my life back!! I know it will never be like it was before... I know my dream career that I worked 10 years to get to is gone.... But there has to be more out of life Than laying in bed everyday in so much pain it hurts to move at all or even have the sheets touch you... I was made for more than this! I refuse to accept this is my fate and I will do anything and everything I can to get some quality of life back
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I haven't posted my site in quite some time because I was hoping things would have turned around quicker and that I would have only had to stay in Arkansas the orignal 12 weeks. However that is not the case. Starting next week we are adding on two additional doctors to my case in the hopes that we Start seeing some improvement. With that being said I'm looking at at least 12 more weeks here and the possibility of having to buy a seperate machine that costs nearly 20 thousand dollars. If we dont see progress soon we have a few other options. There is one doctor in Nashville and one doctor in new Jersey that both specialize in this disease and if those two fail we still may have to look into going to Italy. My workmans comp is not paying for any of these treatments and costs are piling up by the day. If everyone could please share my gofundme page again I would greatly appreciate it. I am so blessed to have so many wonderful friends and family on my side
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Well I met with the doctor yesterday to have a few tests done. There are 3 parts of your nervous system. A healthy persons would all run at 100% . The doctor said most patients she sees run between 40-60%....my tests however were not good at all. I scored 3%,6%,and 9%. She said I was the hottest mess shes ever seen!! She couldn't believe I was still walking and not in a wheel chair. Monday I start treatment of 9-6 each day. Judging by my results she thinks I'm going to have to stay even longer so every dollar helps at this point. Thankyou to everyone that has helped already. ❤❤
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I wanted to thank everyone who has taken time to read my story and also share it. I want to be able to inform as mant people as possible about this horrendous disease that takes so many innocent lives. Thankyou again everyone who has donated!! I REACHED A HUGE MILESTONE!! I HAVE MADE ENOUGH TO PAY FOR THE FIRST 10 DAYS..I still have at least 11 weeks to go but I feel so blessed to have the help I have gotten so far. I hate having to ask for health but this disease has literally taken every last penny I have, so ive had to push my pride aside and ask for help. those that know me know my favorite thing to do is work and I use to enjoy working 60 or 70 hour work weeks. I pray that this treatment can give me my life back and that I am able to pay it forward for all the incredible help I have recieved.
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Read a Previous Update
Tinna Counsell
10 months ago

Have you tried cbd oil, concentrated hemp oil? It does work wonders with rebalancing the immune system. My 11 year old daughter has lch, immune system cancer and it's reduced her tumour by over 60%

+ Read More
Polly Montgomery
10 months ago

I caught this awful disease in 2010. Every operation it gets worse. I can so relate to your pain and frustration. I've never seen a case as bad as yours. I am so terribly sorry for your suffering. I wish I could donate but I am on disability alone with 2 kids. I hope you reach your goal and soon. Godspeed.

+ Read More
Sarah Elizabeth Caroline
10 months ago
6
6

Your story is so similar to mineand many other, but it took me a year and three months to get diagnosis, spread to full body, and onset was July 16th 2006. I do not have money to give but my prayers are with you as well as the hearts of so many in the RSD/CRPS community.

+ Read More
Sandy Wood
10 months ago
5
5

I also have CRPS,since 2010! Multiple drs ,multiple surgeries. Living with chronic pain is very debilitating. You will be in my prayers,

+ Read More
Brandy Nesmith Latour
10 months ago
4
4

I also have RSD/CRPS. It's the so horrible words cannot describe. I have had 38 authors and counting. It's a fight every single day. I pray everyday for a cure for this diesease. I had worked since the day I could until this disease attacked my body all over then I had to quit working and get on disability it was the hardest thing I have ever had to do. Just keep fighting and I will pray for you. We all just have to spread awareness and fight like hell. God Bless.

+ Read More
Chrissy Adams
5 months ago
1
1

She must get admitted in Ayurveda Detoxification center . Sarvangdhara with Chandan bala tail + Kumkumadi tail + Jatyadi tail ..This Dhara will cool the skin and heal the wounds .The rest treatment per protocol . DeepanPachanVirechan ....Panchtikta ghrit orally will cool the superficial skin and penetration of oil will heal and Soothe.

+ Read More
Steve Bogle
5 months ago
1
1

I got this awful disease in 1996 and it did burn out around 2007 or 2008. I cant believe I lived through the pain but after moving to AZ and with the help of God and a good doctor it started going away and one morning my hand started to work a little better and now 10 years later you cant tell I had it. I pray that everyone that has this crap gets the same results i did. KEEP FIGHTING!!!

+ Read More
Betsy K Williams
7 months ago
1
1

Kayla I believe homeopathy can help you. I am a classical homeopath you can contact me or find a classical homeopath local to you. I truly believe it can help you.

+ Read More
Trina Hunt
9 months ago
1
1

I have been battling this disease since 2002, it takes your life away and all you really ever want is relief, to be any part of "normal", it took 3 years to finally get a diagnosis, after 13 surgeries, therapy and being treated like some one looking for pain pills, it was validating to have someone say "your not crazy, your pain is real". I will be praying for you, don't give up or give in to the pain!!

+ Read More
Vonnie Turner
9 months ago
1
1

I'm so sorry I cannot donate at this time. I live on a very limited income and struggle just to get through each month. Your story has saddened me so much and I will be following for updates. Please know I will have you in my prayers each night. Having severe chronic pain myself, I can't even imagine the severity of yours. I just recently read a FB post about a little boy with this condition or one similar. I will see if I can find it. Don't ever give up! I will share your story on FB and also with the Benedictine nuns to add you to their prayer list. God bless and heal you.

+ Read More
Joni Schuster Trout
10 months ago
1
1

Kayla please learn about Lipsomal Vitamn C and Lipsomal Glutithione. Less expensive than intravenous vitamin C and as effective. This repairs the body's cells. Vitamin C as you probably know, large doses, are given to burn patients, as Vitamin C is what the body needs to heal itself. You have nothing to lose and perhaps much to gain. Google, You Tube, offer info. You can even make it yourself. You'll want to drink it daily. God Bless and good luck in Arkansas. Please consider Lipsomal C!

+ Read More
Frank Smith
4 months ago

You don't need to go to Italy. Gruenthal is doing trials for neridronic acid here in the US nationwide for free!

+ Read More
Kathryn Cleveland
4 months ago

Your symptoms sound a lot like Gadolinium Poisoning. If you have had an MRI with contrast then you retained some of the Gadolinium, a heavy metal that can cause many of your symptoms. If I were you I would do a 24 hour urine test for Gadolinium to see if you are excreting gadolinium. A low count on the first test does not necessarily mean you aren't poisoned by Gadolinium. It might mean the heavy metal is deep in your tissues and is not being excreted. So, if you have had the MRI contrast and get a low count on the first test, you should run a second immediately after taking a chelation treatment that will remove some of the heavy metals. There is no known cure for Gadolinium Poisoning or Gadolinium Deposition Disease, but if this is part of your problem, it will be helpful to know.

+ Read More
Alexander Wolf
4 months ago

Kayla, I know nothing I can say will ease your pain. That said, you must be an extremely resilient person, not to mention brave. I hope that your Dr.s can find some way of easing your torment. Hang in there.

+ Read More
Dennis Siebert
5 months ago

My heart goes out to you. My wife was diagnosed with this disease when it was called RSD (Reflex Sympathetic Dystrophy), it was later changed to CRPS. There are more people than you realize with this terrible condition and there are several national organizations and many regional support groups in the US and abroad. My wife belonged to RSDHope.org where she found great support. They have support groups in many states. We were married for 33 years and she suffered for 30 of them with RSD. I hope you have found a good support group and that someone will find a cure for this horrible disease soon. God bless!

+ Read More
Lindy King
5 months ago

Why go to Italy? Same trials are now in U.S.: LabanDecember 30, 2016 at 5:10 PM There is another Neridronate trial starting in the US January 2017. This time it is an open label trial (=every body gets the drug) and they use the same protocol as in Italy (100 mg x 4 over 10 days). I have asked one of the trial researchers for the official contact information, if anybody is interested. AnonymousFebruary 15, 2017 at 4:24 PM Hello! I am a study coordinator with Clinical Trials of South Carolina. We are actually doing this study right now here in Charleston, SC. You or anyone else that is interested can call our recruitment line from 8am to 5pm Monday through Thursday at 843-789-3707 to learn more. It is open label (meaning no placebo) as the OP stated before. ---- Here is the official link to the trial: https://clinicaltrials.gov/ct2/show/NCT02972359?term=Complex+Regional+Pain+Syndrome&rank=24

+ Read More
James Bare
5 months ago

Please consult with your treating physician about what I am about to suggest. This is information learned by spending more hours than I care to think about searching for answers to CRPS. My research found that many the symptoms of CRPS can be improved with a simple protocol that is oriented towards shutting down it's origin. Namely Neurogenic Inflammation or NI. NI can be mediated with anti NI agents. There are a lot of suggestions that have and will come your way. Most may be of some benefit to your general health. Unless a suggestion addresses NI, it isn't going to do much for CRPS. 1. Time release opioids . Opioids are anti NI agents. Short acting opioids tend to provide short term relief, but peak in concentration quickly then diminish in action. Long acting opioids tend to hold a certain level that stays constant and thus manages both pain and the NI as well. 2. Diazepam or more commonly known as Valium. Don't need much a low dose is often used . This is a very good anti NI agent. The other various related medication such as Lorazepam and others don't work very well as NI agents. 3. DL-Phenylalanine - This is an amino acid that has a strong anti NI and also pain relieving effect. Best effects are with large doses. One would start at one gram a day and slowly work up to around 4 grams a day. Capsules tend to work better for most than pills. 4. The OTC allergy medication - Zyrtec .This is a specific anti NI agent . 5. Boswellia - An herb that might be of some benefit and help with a lot of the general inflammatory effects your skin is suffering. Again, this is just information . There are other anti NI agents which are used in CRPS. Ketamine is one common one for example. Others with CRPS have used this information about managing NI to good benefit. Blessings to you in this difficult time.

+ Read More
Calandra Farmer
5 months ago

I'm so sorry you are suffering from this horrible disease. Breaks my heart. Just donated a little something. And I will checking on you and donating what I can. Love, Khia

+ Read More
Penny Luker
8 months ago

There is US trials of Neridronate that are free. They have a Facebook page. I went to Italy for the treatment & it totally saved my life! I had CRPS in both hands. Was unable to write, open doors - anything to do with hands/wrists. I was taking 4-5 Norco 10/325 a day. I can't remember the last time I took a pain pill. I've read about a lady who had it for 12 years who had a 90% recovery.

+ Read More
Matthew Glynn
8 months ago

I hope it is reassuring to you to know that I have had multiple lectures regarding your disease in my medical program, Monk. It is finally getting the attention it deserves in the medical field. It is hard to witness seeing you being the most extreme case of the disease out there. I'm rooting for you every day amiga. Stay strong

+ Read More

$9,542 of $20,000 goal

Raised by 187 people in 10 months
Created April 5, 2017
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BN
$25
Barbara Nolan
3 days ago

Praying for you.

$25
Carmen Costine
5 months ago

Auto Immune diseases like yours and mine are difficult to treat. I encourage you to pursue changes to your diet to allow your body to heal, and alternative therapies in addition to medical treatments.

$25
Jim Broatch
5 months ago

Wishing you God speed

$20
Anonymous
5 months ago
Tinna Counsell
10 months ago

Have you tried cbd oil, concentrated hemp oil? It does work wonders with rebalancing the immune system. My 11 year old daughter has lch, immune system cancer and it's reduced her tumour by over 60%

+ Read More
Polly Montgomery
10 months ago

I caught this awful disease in 2010. Every operation it gets worse. I can so relate to your pain and frustration. I've never seen a case as bad as yours. I am so terribly sorry for your suffering. I wish I could donate but I am on disability alone with 2 kids. I hope you reach your goal and soon. Godspeed.

+ Read More
Sarah Elizabeth Caroline
10 months ago
6
6

Your story is so similar to mineand many other, but it took me a year and three months to get diagnosis, spread to full body, and onset was July 16th 2006. I do not have money to give but my prayers are with you as well as the hearts of so many in the RSD/CRPS community.

+ Read More
Sandy Wood
10 months ago
5
5

I also have CRPS,since 2010! Multiple drs ,multiple surgeries. Living with chronic pain is very debilitating. You will be in my prayers,

+ Read More
Brandy Nesmith Latour
10 months ago
4
4

I also have RSD/CRPS. It's the so horrible words cannot describe. I have had 38 authors and counting. It's a fight every single day. I pray everyday for a cure for this diesease. I had worked since the day I could until this disease attacked my body all over then I had to quit working and get on disability it was the hardest thing I have ever had to do. Just keep fighting and I will pray for you. We all just have to spread awareness and fight like hell. God Bless.

+ Read More
Chrissy Adams
5 months ago
1
1

She must get admitted in Ayurveda Detoxification center . Sarvangdhara with Chandan bala tail + Kumkumadi tail + Jatyadi tail ..This Dhara will cool the skin and heal the wounds .The rest treatment per protocol . DeepanPachanVirechan ....Panchtikta ghrit orally will cool the superficial skin and penetration of oil will heal and Soothe.

+ Read More
Steve Bogle
5 months ago
1
1

I got this awful disease in 1996 and it did burn out around 2007 or 2008. I cant believe I lived through the pain but after moving to AZ and with the help of God and a good doctor it started going away and one morning my hand started to work a little better and now 10 years later you cant tell I had it. I pray that everyone that has this crap gets the same results i did. KEEP FIGHTING!!!

+ Read More
Betsy K Williams
7 months ago
1
1

Kayla I believe homeopathy can help you. I am a classical homeopath you can contact me or find a classical homeopath local to you. I truly believe it can help you.

+ Read More
Trina Hunt
9 months ago
1
1

I have been battling this disease since 2002, it takes your life away and all you really ever want is relief, to be any part of "normal", it took 3 years to finally get a diagnosis, after 13 surgeries, therapy and being treated like some one looking for pain pills, it was validating to have someone say "your not crazy, your pain is real". I will be praying for you, don't give up or give in to the pain!!

+ Read More
Vonnie Turner
9 months ago
1
1

I'm so sorry I cannot donate at this time. I live on a very limited income and struggle just to get through each month. Your story has saddened me so much and I will be following for updates. Please know I will have you in my prayers each night. Having severe chronic pain myself, I can't even imagine the severity of yours. I just recently read a FB post about a little boy with this condition or one similar. I will see if I can find it. Don't ever give up! I will share your story on FB and also with the Benedictine nuns to add you to their prayer list. God bless and heal you.

+ Read More
Joni Schuster Trout
10 months ago
1
1

Kayla please learn about Lipsomal Vitamn C and Lipsomal Glutithione. Less expensive than intravenous vitamin C and as effective. This repairs the body's cells. Vitamin C as you probably know, large doses, are given to burn patients, as Vitamin C is what the body needs to heal itself. You have nothing to lose and perhaps much to gain. Google, You Tube, offer info. You can even make it yourself. You'll want to drink it daily. God Bless and good luck in Arkansas. Please consider Lipsomal C!

+ Read More
Frank Smith
4 months ago

You don't need to go to Italy. Gruenthal is doing trials for neridronic acid here in the US nationwide for free!

+ Read More
Kathryn Cleveland
4 months ago

Your symptoms sound a lot like Gadolinium Poisoning. If you have had an MRI with contrast then you retained some of the Gadolinium, a heavy metal that can cause many of your symptoms. If I were you I would do a 24 hour urine test for Gadolinium to see if you are excreting gadolinium. A low count on the first test does not necessarily mean you aren't poisoned by Gadolinium. It might mean the heavy metal is deep in your tissues and is not being excreted. So, if you have had the MRI contrast and get a low count on the first test, you should run a second immediately after taking a chelation treatment that will remove some of the heavy metals. There is no known cure for Gadolinium Poisoning or Gadolinium Deposition Disease, but if this is part of your problem, it will be helpful to know.

+ Read More
Alexander Wolf
4 months ago

Kayla, I know nothing I can say will ease your pain. That said, you must be an extremely resilient person, not to mention brave. I hope that your Dr.s can find some way of easing your torment. Hang in there.

+ Read More
Dennis Siebert
5 months ago

My heart goes out to you. My wife was diagnosed with this disease when it was called RSD (Reflex Sympathetic Dystrophy), it was later changed to CRPS. There are more people than you realize with this terrible condition and there are several national organizations and many regional support groups in the US and abroad. My wife belonged to RSDHope.org where she found great support. They have support groups in many states. We were married for 33 years and she suffered for 30 of them with RSD. I hope you have found a good support group and that someone will find a cure for this horrible disease soon. God bless!

+ Read More
Lindy King
5 months ago

Why go to Italy? Same trials are now in U.S.: LabanDecember 30, 2016 at 5:10 PM There is another Neridronate trial starting in the US January 2017. This time it is an open label trial (=every body gets the drug) and they use the same protocol as in Italy (100 mg x 4 over 10 days). I have asked one of the trial researchers for the official contact information, if anybody is interested. AnonymousFebruary 15, 2017 at 4:24 PM Hello! I am a study coordinator with Clinical Trials of South Carolina. We are actually doing this study right now here in Charleston, SC. You or anyone else that is interested can call our recruitment line from 8am to 5pm Monday through Thursday at 843-789-3707 to learn more. It is open label (meaning no placebo) as the OP stated before. ---- Here is the official link to the trial: https://clinicaltrials.gov/ct2/show/NCT02972359?term=Complex+Regional+Pain+Syndrome&rank=24

+ Read More
James Bare
5 months ago

Please consult with your treating physician about what I am about to suggest. This is information learned by spending more hours than I care to think about searching for answers to CRPS. My research found that many the symptoms of CRPS can be improved with a simple protocol that is oriented towards shutting down it's origin. Namely Neurogenic Inflammation or NI. NI can be mediated with anti NI agents. There are a lot of suggestions that have and will come your way. Most may be of some benefit to your general health. Unless a suggestion addresses NI, it isn't going to do much for CRPS. 1. Time release opioids . Opioids are anti NI agents. Short acting opioids tend to provide short term relief, but peak in concentration quickly then diminish in action. Long acting opioids tend to hold a certain level that stays constant and thus manages both pain and the NI as well. 2. Diazepam or more commonly known as Valium. Don't need much a low dose is often used . This is a very good anti NI agent. The other various related medication such as Lorazepam and others don't work very well as NI agents. 3. DL-Phenylalanine - This is an amino acid that has a strong anti NI and also pain relieving effect. Best effects are with large doses. One would start at one gram a day and slowly work up to around 4 grams a day. Capsules tend to work better for most than pills. 4. The OTC allergy medication - Zyrtec .This is a specific anti NI agent . 5. Boswellia - An herb that might be of some benefit and help with a lot of the general inflammatory effects your skin is suffering. Again, this is just information . There are other anti NI agents which are used in CRPS. Ketamine is one common one for example. Others with CRPS have used this information about managing NI to good benefit. Blessings to you in this difficult time.

+ Read More
Calandra Farmer
5 months ago

I'm so sorry you are suffering from this horrible disease. Breaks my heart. Just donated a little something. And I will checking on you and donating what I can. Love, Khia

+ Read More
Penny Luker
8 months ago

There is US trials of Neridronate that are free. They have a Facebook page. I went to Italy for the treatment & it totally saved my life! I had CRPS in both hands. Was unable to write, open doors - anything to do with hands/wrists. I was taking 4-5 Norco 10/325 a day. I can't remember the last time I took a pain pill. I've read about a lady who had it for 12 years who had a 90% recovery.

+ Read More
Matthew Glynn
8 months ago

I hope it is reassuring to you to know that I have had multiple lectures regarding your disease in my medical program, Monk. It is finally getting the attention it deserves in the medical field. It is hard to witness seeing you being the most extreme case of the disease out there. I'm rooting for you every day amiga. Stay strong

+ Read More
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