Rebecca 1, Ehlers-Danlos Syndrome 0
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Help Rebecca Battle Ehlers Danlos Syndrome
Rebecca Patrick-Howardis battling a rare genetic connective tissue disorder called Ehlers Danlos Syndrome. Although Rebecca is only 36 years old, her body is that of someone who is twice her age and her ongoing battle with the chronic illness and widespread pain as a result of her EDS has severely affected her quality of life.
What IS Ehlers Danlos Syndrome (EDS)?
EDS is a genetic collagen mutation that affects the entire body. Since collagen holds all the cells, skin, organs, and joints together, and EDS causes faulty collagen production, nothing really works right in Rebecca’s body anymore.
If you will, picture Rebecca’s body as a house made out of wet newspapers. There is no cure for EDS, only treatments (that have their own drawbacks) for the myriad of symptoms she faces. The faulty collagen causes numerous issues and symptoms and a “cluster” of related disorders.
So what’s wrong with Rebecca, exactly?
EDS, being a syndrome, is not just "one" thing. There are literally hundreds of related disorders, diseases, and symptoms associated with EDS. Rebecca suffers from many of these herself and they severely impact her quality of life. Some of the issues that Rebecca faces due to her EDS include:
Cardiovascular Issues
· Thickened mitral valve leaflets and mitral insufficiency
· Bicuspid aortic valve disease
· Heart murmur
· Tricuspid valve regurgitation
· Aortic valve sclerosis
· Mild atherosclerotic intimal thickening along the ascending aorta.
· Pericardial effusion.
· Mild ectasia of the ascending thoracic aorta
· Borderline left ventricular enlargement with low-normal systolic function
· Global mild hypokinesis of the left ventricle.
Muscoskeletal Issues
· Early onset osteoarthritis in both hips
· Bursitis
· Chronic “bone” pain
· Joint instability
· Daily subluxations
· Chronic dislocations
· Scoliosis
· Cranial Cervio Instability (Difficulty holding head upright due to neck weakness)
* Hyperfleximobility
· Chronic & Widespread Pain: including Articular, Musculoskeletal, Neuromuscular, & Myofascial
Neurological Issues
· Neuropathy in the feet
· Numbness/weakness in hands, arms, feet, and legs
· Chronic Fatigue Syndrome
· Chiari Malformation (Tonsils in the brain hang down into the neck)
· Chronic sinusitis
· Sciatica
· Restless Leg Syndrome
· Chronic Migraines
· Vasovagal Syncope
* Seizures
Gastrointestinal Issues
· Inflammation of the ileum (ileitis)
· Gastoparesis
· Chronic nausea and vomiting
· Bleeding ulcers
Dental Issues
· TMJ
· Regular dental fractures
· Bleeding gums/periodontitis
* Dental crowding
* High soft palate
Reproductive System Issues
· Adenomyosis (hysterectomy at age 31)
· Endometriosis
· Vestibulitis
· Severe pain with intercourse
* Vulvodynia
Other Issues
· Magnesium deficiency
· Anemia
· Vitamin D deficiency
· Anxiety and panic attacks
· Depression
· Difficulty concentrating
· “Brain Fog”
· Hair Loss
· Kidney stones
* Mast Cell Activation Disorder (the body suddenly decides it's allergic to random things, causing hives, swelling, and anxiety)
A few of Rebecca’s surgeries due to EDS issue…
· Brain surgery for a Chiari Malformation
· Gallbladder removal
· Appendix removal
· Hysterectomy
· Endometriosis removal (3 different surgeries)
· Peptic ulcer repair
What’s a day like for Rebecca?
Rebecca never knows what it’s going to be like from one day to another. On “good” days she can get out of bed, go for walks around her yard with her children, eat a meal and keep it down, ride into town and walk around a flea market, and sit up in front of the television with the family and watch silly horror movies.
On “bad” days she is unable to move. Riding in a car has become painful. Sitting upright is excruciating because her neck isn't always able to support her head, even with a neck brace. Being upright is not only painful, but often makes her vomit. Although she is on pain medication, if there is a new development, like an infection, the pain intensifies and it becomes difficult to control.
Sometimes she ends up in the hospital, unable to control the pain in her lower body-pain that is caused by thousands of tiny tears in the fascia and small hemmorages within the bone. She dislocates her joints easily; she can and has dislocated her hips simply by turning over in bed or a rib from standing up too quickly. On “bad” days her husband has to carry her to the bathtub and help her wash off because she’s unable to put weight on her legs or hips.
Some of the cardiovascular issues cause her to frequently suffer from irregular heartbeats, fainting spells, and severe fatigue. The fatigue can get so bad that during these episodes, she needs help with simple activities like brushing her hair and getting dressed.
Even though applying for disability would help with the medical bills, Rebecca enjoys working and is one of Amazon’s best-selling paranormal authors. She continues to write her books and work on her stories, even when it means propping the laptop up in bed with her (she’s even worked on her books in the hospital, reading sample chapters aloud to nurses and techs as they check vitals and change IV bags).
Although her quality of life continues to diminish in many aspects, Rebecca continues to push forward for her family’s sake. She orders crafting supplies from the internet and creates “masterpieces” with her children. Using her book royalties, she takes her family on vacations to destinations where she’s able to relax and get out without as much difficulty. She tries to make the most of every moment.
It is very important to Rebecca to give her children as good of lives as possible, especially since her youngest son died in his sleep in 2010. Since then, she and her husband have strived to work hard and push themselves to find better opportunities.
What does Rebecca Need?
Part 1: Rebecca needs assistance in paying off back medical bills. For awhile, Rebecca didn't have health insurance and now she is saddled with more medical bills than she can handle-and even more coming. Rebecca supports her family through her book royalties. Unfortunately, over the past year, she has been hospitalized several times due to EDS complications and she is now more than $20,000 in debt from medical bills. Despite her payments towards them, some have been sent to collection agencies. She is determined to pay them off completely and has been sending as much in as $1500 a month but the financial burden has become too great, especially since her latest hospitalization set her back several months in terms of her writing. Her newest book should have been released in February 2016, for instance, but has been pushed back 2 months because she was simply too ill to finished it.
She has paid off a lot of the bills but is still $20,000 in debt and there are more on the way.
(This image is just from one single company. She pays more than 20 individual companies per month. This one is from am emergency service.)
Although some people have suggested she file for bankruptcy, she would like to pay the bills off since she feels a responsibility to them.
In addition, Rebecca and her family need to relocate. They currently live in a beautiful town, on an isolated ridge they love, but they are more than an hour from a hospital familiar with EDS. When Rebecca has a medical emergency, it’s a frightening rush to get to someone who can help her. Rebecca suffers from a very real risk of aneurysm rupture or dissection, as well as major organ rupture, and therefore relocating to a place that offers better access to medical care is vital. Average lifespan for a person with Vascular Ehlers-Danlos Syndrome is 42. Rebecca has already lost every organ she can safely live without and her family does not know, from one day to the next, what might happen with her heart.
Moving offers:
* Closer proximity to knowledgeable specialists
* Easier access to recreational activities Rebecca can enjoy (currently the long car rides cause further damage to her joints & tissue and she's exhausted by the time they get anywhere)
* Regular appointments with proper physical therapy, such as water therapy
* A house that is more conducive to Rebecca's physical needs (fewer steps, everythng on one level, more space)
* A warmer climate that's easier on her bones and joints
Paying off the medical bills and clearing up credit issues (all caused by her illness, including her brain surgery, and the burial and medical bills of her young son’s death) is imperative to her family’s relocation. Moving to another area, with better access to specialized care, could be a matter of life and death for her-not to mention an improved QUALITY of life since it would be easier for her to get out of the house. At present time, the drive into town is so long that it’s painful and she is rarely able to enjoy eating out or walking around stores, much less the hiking and exploring she once enjoyed.
Part 2: Rebecca is asking for funds to help her receive immediate and comprehensive clinical care. EDS is not curable but some of the symptoms and related conditions can be treated and improved upon. Due to the uncommonness of this condition, it has been difficult for her to find knowledgeable medical care providers in Eastern and Central Kentucky. She must be evaluated regularly by a cardiologist, rheumatologist, gastroenterologist, physical therapist, pain management specialist, allergist, and neurologist.
There are not many experts in the US, and those who do specialize in the disorder have long wait lists-the new Ehlers Danlos National Foundation Center for Clinical Care and Research at the Greater Baltimore Medical Center currently has a 2 year wait list.
However, since Rebecca already has a diagnosis, she can be evaluated at the Mayo Clinic in Rochester, Minnesota. She’s already been accepted there for evaluation and clinical care and there is an appointment slot waiting for her within the next 12 weeks. However, her insurance deductible is $4,500. She will need to pay this, along with travel expenses and 20% of the costs associated with treatment in order to go as a patient.
Once she is at the Mayo Clinic, Rebecca will be able to find the all-inclusive evaluation and clinical care she has been unable to get elsewhere. Over the course of several days she’ll work with orthopedists, cardiologists, rheumatologists, and GI doctors, and pain management specialists. Upon running imaging tests and evaluating her, the supporting physicians will create a comprehensive care and treatment plan that is individualized for her severe case and tailored for her specific needs. It is estimated that she will be out of pocket around $10,000 for the evaluation, although several of her book readers who live in the area have generously offered to let her stay with them to avoid lodging costs.
Part 3: Rebecca will require continuing treatment, even after she returns home. EDS is progressive and does not have a cure. Rebecca is optimistic that a good treatment plan will allow her doctors outside of Mayo to find courses of action that improve her quality of life, especially in regards to pain management. She expects to have several more surgeries and procedures, including a fusion for her cranial cervio instability.
(Random mast cell rash on the foot-allergen unknown.)
What does the future hold?
Rebecca’s symptoms have drastically worsened over the past year. She is starting to have more “bad” days than good and although she generally maintains a positive outlook on life, the constant pain, fatigue, and difficulty enjoying things she used to love to do are taking their toll on her. The main reason she wants to be evaluated at Mayo Clinic is so that she leaves no stone unturned and can continue providing a good life for her family, and for herself.
Rebecca loves to write and says she will continue to write her books-even if it means someone has to prop up a tape recorder in her lap and transcribe everything later for her.
Your Donation
Your donation will go towards helping Rebecca pay off her medical bills and allow her to seek evaluation for the help she needs. The evaluation and treatment plan will hopefully improve her current quality of life, but possibility slow down the progression and escape permanent disability. As a mother, wife, and business owner who isn’t ready to throw in the towel just yet, you can help her fight EDS and achieve a better quality of life that is not a slave to pain, depression, and general malaise caused by the genetic disorder.
Other Ways of Helping
If you would rather show your support to Rebecca through other means, she would be honored if you’d check out her books at:
Rebecca’s Amazon Page
or her website:
Rebeccaphoward.net
To learn more about Ehlers Danlos Syndrome, please visit the Ehlers Danlos National Foundation Website :
EDNF
Thanks
There are no words to express how thankful Rebecca is for any help that is offered. She is wrestling with the idea of accepting money from people and torn between wanting to move on from this and seek treatment for a better life and feeling like a "failure" for not being able to pay it all off herself in a timely manner. But although Rebecca IS a successful author, the financial burden has become too great, especially since Rebecca now has difficulty keeping up with the marketing and other demands the publishing business puts on authors-not to mention the actual writing. At the end of the day, she knows her family is drowning in the bills, she knows she needs proper evaluation and treatment, and doesn't want to leave her husband and children with a gruesome debt if there was to be a medical emergency she didn't come out of. Paying these off is another way she can support those she loves.
She and her family are grateful.
(Sick or not, it's never too late to dance with the people you love.)
Help Rebecca Battle Ehlers Danlos Syndrome
Rebecca Patrick-Howardis battling a rare genetic connective tissue disorder called Ehlers Danlos Syndrome. Although Rebecca is only 36 years old, her body is that of someone who is twice her age and her ongoing battle with the chronic illness and widespread pain as a result of her EDS has severely affected her quality of life.
What IS Ehlers Danlos Syndrome (EDS)?
EDS is a genetic collagen mutation that affects the entire body. Since collagen holds all the cells, skin, organs, and joints together, and EDS causes faulty collagen production, nothing really works right in Rebecca’s body anymore.
If you will, picture Rebecca’s body as a house made out of wet newspapers. There is no cure for EDS, only treatments (that have their own drawbacks) for the myriad of symptoms she faces. The faulty collagen causes numerous issues and symptoms and a “cluster” of related disorders.
So what’s wrong with Rebecca, exactly?
EDS, being a syndrome, is not just "one" thing. There are literally hundreds of related disorders, diseases, and symptoms associated with EDS. Rebecca suffers from many of these herself and they severely impact her quality of life. Some of the issues that Rebecca faces due to her EDS include:
Cardiovascular Issues
· Thickened mitral valve leaflets and mitral insufficiency
· Bicuspid aortic valve disease
· Heart murmur
· Tricuspid valve regurgitation
· Aortic valve sclerosis
· Mild atherosclerotic intimal thickening along the ascending aorta.
· Pericardial effusion.
· Mild ectasia of the ascending thoracic aorta
· Borderline left ventricular enlargement with low-normal systolic function
· Global mild hypokinesis of the left ventricle.
Muscoskeletal Issues
· Early onset osteoarthritis in both hips
· Bursitis
· Chronic “bone” pain
· Joint instability
· Daily subluxations
· Chronic dislocations
· Scoliosis
· Cranial Cervio Instability (Difficulty holding head upright due to neck weakness)
* Hyperfleximobility
· Chronic & Widespread Pain: including Articular, Musculoskeletal, Neuromuscular, & Myofascial
Neurological Issues
· Neuropathy in the feet
· Numbness/weakness in hands, arms, feet, and legs
· Chronic Fatigue Syndrome
· Chiari Malformation (Tonsils in the brain hang down into the neck)
· Chronic sinusitis
· Sciatica
· Restless Leg Syndrome
· Chronic Migraines
· Vasovagal Syncope
* Seizures
Gastrointestinal Issues
· Inflammation of the ileum (ileitis)
· Gastoparesis
· Chronic nausea and vomiting
· Bleeding ulcers
Dental Issues
· TMJ
· Regular dental fractures
· Bleeding gums/periodontitis
* Dental crowding
* High soft palate
Reproductive System Issues
· Adenomyosis (hysterectomy at age 31)
· Endometriosis
· Vestibulitis
· Severe pain with intercourse
* Vulvodynia
Other Issues
· Magnesium deficiency
· Anemia
· Vitamin D deficiency
· Anxiety and panic attacks
· Depression
· Difficulty concentrating
· “Brain Fog”
· Hair Loss
· Kidney stones
* Mast Cell Activation Disorder (the body suddenly decides it's allergic to random things, causing hives, swelling, and anxiety)
A few of Rebecca’s surgeries due to EDS issue…
· Brain surgery for a Chiari Malformation
· Gallbladder removal
· Appendix removal
· Hysterectomy
· Endometriosis removal (3 different surgeries)
· Peptic ulcer repair
What’s a day like for Rebecca?
Rebecca never knows what it’s going to be like from one day to another. On “good” days she can get out of bed, go for walks around her yard with her children, eat a meal and keep it down, ride into town and walk around a flea market, and sit up in front of the television with the family and watch silly horror movies.
On “bad” days she is unable to move. Riding in a car has become painful. Sitting upright is excruciating because her neck isn't always able to support her head, even with a neck brace. Being upright is not only painful, but often makes her vomit. Although she is on pain medication, if there is a new development, like an infection, the pain intensifies and it becomes difficult to control.
Sometimes she ends up in the hospital, unable to control the pain in her lower body-pain that is caused by thousands of tiny tears in the fascia and small hemmorages within the bone. She dislocates her joints easily; she can and has dislocated her hips simply by turning over in bed or a rib from standing up too quickly. On “bad” days her husband has to carry her to the bathtub and help her wash off because she’s unable to put weight on her legs or hips.
Some of the cardiovascular issues cause her to frequently suffer from irregular heartbeats, fainting spells, and severe fatigue. The fatigue can get so bad that during these episodes, she needs help with simple activities like brushing her hair and getting dressed.
Even though applying for disability would help with the medical bills, Rebecca enjoys working and is one of Amazon’s best-selling paranormal authors. She continues to write her books and work on her stories, even when it means propping the laptop up in bed with her (she’s even worked on her books in the hospital, reading sample chapters aloud to nurses and techs as they check vitals and change IV bags).
Although her quality of life continues to diminish in many aspects, Rebecca continues to push forward for her family’s sake. She orders crafting supplies from the internet and creates “masterpieces” with her children. Using her book royalties, she takes her family on vacations to destinations where she’s able to relax and get out without as much difficulty. She tries to make the most of every moment.
It is very important to Rebecca to give her children as good of lives as possible, especially since her youngest son died in his sleep in 2010. Since then, she and her husband have strived to work hard and push themselves to find better opportunities.
What does Rebecca Need?
Part 1: Rebecca needs assistance in paying off back medical bills. For awhile, Rebecca didn't have health insurance and now she is saddled with more medical bills than she can handle-and even more coming. Rebecca supports her family through her book royalties. Unfortunately, over the past year, she has been hospitalized several times due to EDS complications and she is now more than $20,000 in debt from medical bills. Despite her payments towards them, some have been sent to collection agencies. She is determined to pay them off completely and has been sending as much in as $1500 a month but the financial burden has become too great, especially since her latest hospitalization set her back several months in terms of her writing. Her newest book should have been released in February 2016, for instance, but has been pushed back 2 months because she was simply too ill to finished it.
She has paid off a lot of the bills but is still $20,000 in debt and there are more on the way.
(This image is just from one single company. She pays more than 20 individual companies per month. This one is from am emergency service.)
Although some people have suggested she file for bankruptcy, she would like to pay the bills off since she feels a responsibility to them.
In addition, Rebecca and her family need to relocate. They currently live in a beautiful town, on an isolated ridge they love, but they are more than an hour from a hospital familiar with EDS. When Rebecca has a medical emergency, it’s a frightening rush to get to someone who can help her. Rebecca suffers from a very real risk of aneurysm rupture or dissection, as well as major organ rupture, and therefore relocating to a place that offers better access to medical care is vital. Average lifespan for a person with Vascular Ehlers-Danlos Syndrome is 42. Rebecca has already lost every organ she can safely live without and her family does not know, from one day to the next, what might happen with her heart.
Moving offers:
* Closer proximity to knowledgeable specialists
* Easier access to recreational activities Rebecca can enjoy (currently the long car rides cause further damage to her joints & tissue and she's exhausted by the time they get anywhere)
* Regular appointments with proper physical therapy, such as water therapy
* A house that is more conducive to Rebecca's physical needs (fewer steps, everythng on one level, more space)
* A warmer climate that's easier on her bones and joints
Paying off the medical bills and clearing up credit issues (all caused by her illness, including her brain surgery, and the burial and medical bills of her young son’s death) is imperative to her family’s relocation. Moving to another area, with better access to specialized care, could be a matter of life and death for her-not to mention an improved QUALITY of life since it would be easier for her to get out of the house. At present time, the drive into town is so long that it’s painful and she is rarely able to enjoy eating out or walking around stores, much less the hiking and exploring she once enjoyed.
Part 2: Rebecca is asking for funds to help her receive immediate and comprehensive clinical care. EDS is not curable but some of the symptoms and related conditions can be treated and improved upon. Due to the uncommonness of this condition, it has been difficult for her to find knowledgeable medical care providers in Eastern and Central Kentucky. She must be evaluated regularly by a cardiologist, rheumatologist, gastroenterologist, physical therapist, pain management specialist, allergist, and neurologist.
There are not many experts in the US, and those who do specialize in the disorder have long wait lists-the new Ehlers Danlos National Foundation Center for Clinical Care and Research at the Greater Baltimore Medical Center currently has a 2 year wait list.
However, since Rebecca already has a diagnosis, she can be evaluated at the Mayo Clinic in Rochester, Minnesota. She’s already been accepted there for evaluation and clinical care and there is an appointment slot waiting for her within the next 12 weeks. However, her insurance deductible is $4,500. She will need to pay this, along with travel expenses and 20% of the costs associated with treatment in order to go as a patient.
Once she is at the Mayo Clinic, Rebecca will be able to find the all-inclusive evaluation and clinical care she has been unable to get elsewhere. Over the course of several days she’ll work with orthopedists, cardiologists, rheumatologists, and GI doctors, and pain management specialists. Upon running imaging tests and evaluating her, the supporting physicians will create a comprehensive care and treatment plan that is individualized for her severe case and tailored for her specific needs. It is estimated that she will be out of pocket around $10,000 for the evaluation, although several of her book readers who live in the area have generously offered to let her stay with them to avoid lodging costs.
Part 3: Rebecca will require continuing treatment, even after she returns home. EDS is progressive and does not have a cure. Rebecca is optimistic that a good treatment plan will allow her doctors outside of Mayo to find courses of action that improve her quality of life, especially in regards to pain management. She expects to have several more surgeries and procedures, including a fusion for her cranial cervio instability.
(Random mast cell rash on the foot-allergen unknown.)
What does the future hold?
Rebecca’s symptoms have drastically worsened over the past year. She is starting to have more “bad” days than good and although she generally maintains a positive outlook on life, the constant pain, fatigue, and difficulty enjoying things she used to love to do are taking their toll on her. The main reason she wants to be evaluated at Mayo Clinic is so that she leaves no stone unturned and can continue providing a good life for her family, and for herself.
Rebecca loves to write and says she will continue to write her books-even if it means someone has to prop up a tape recorder in her lap and transcribe everything later for her.
Your Donation
Your donation will go towards helping Rebecca pay off her medical bills and allow her to seek evaluation for the help she needs. The evaluation and treatment plan will hopefully improve her current quality of life, but possibility slow down the progression and escape permanent disability. As a mother, wife, and business owner who isn’t ready to throw in the towel just yet, you can help her fight EDS and achieve a better quality of life that is not a slave to pain, depression, and general malaise caused by the genetic disorder.
Other Ways of Helping
If you would rather show your support to Rebecca through other means, she would be honored if you’d check out her books at:
Rebecca’s Amazon Page
or her website:
Rebeccaphoward.net
To learn more about Ehlers Danlos Syndrome, please visit the Ehlers Danlos National Foundation Website :
EDNF
Thanks
There are no words to express how thankful Rebecca is for any help that is offered. She is wrestling with the idea of accepting money from people and torn between wanting to move on from this and seek treatment for a better life and feeling like a "failure" for not being able to pay it all off herself in a timely manner. But although Rebecca IS a successful author, the financial burden has become too great, especially since Rebecca now has difficulty keeping up with the marketing and other demands the publishing business puts on authors-not to mention the actual writing. At the end of the day, she knows her family is drowning in the bills, she knows she needs proper evaluation and treatment, and doesn't want to leave her husband and children with a gruesome debt if there was to be a medical emergency she didn't come out of. Paying these off is another way she can support those she loves.
She and her family are grateful.
(Sick or not, it's never too late to dance with the people you love.)
Organizer
Rebecca Patrick-Howard
Organizer