Help Rachael Fight Ehlers Danlos Syndrome
Donativo protegido
Rachael is my sister in law. I asked her husband to explain in depth, her complex and frustrating medical journey, and why they are asking for support to finally heal her broken body. Would you consider donating to this family of 7?
From Rocky, Rachael's husband of 16 years:
I'm not sure where to start. Talking about this is very emotional and difficult to do. For us it started 15 years ago after our first child was born. For Rachael, it was longer than that. She's been battling with this disease for her entire life, just unknowingly. Like many with Ehlers Danlos Syndrome, she also battles with various other illnesses that compound her daily struggles.
For many of the past 15 years we really didn't have a diagnosis. As her pain intensified, little tasks became harder and harder, and with each passing day Rachael became less and less of the vibrant and energetic woman I had married. As you can imagine, she was becoming so frustrated by the constant struggles to get through a day without pain, or a week without massive headaches that laid her out.
The road to a diagnosis has been a long one. It started with an MRI because of ongoing neck pains. That MRI showed that she had thyroid cancer and severe degeneration throughout her spine. When the chiropractor says “you have the neck of a 95 year old woman” you know things are not well. But he, nor any of the other doctors we saw could explain why.
So we treated the cancer.
We chose an alternative method to treating the cancer and that brought with it some major changes to our diet and an even deeper dive into what it really means to be healthy and give the body what it needs to heal itself. This treatment plan defeated the cancer, and also gave her back some of the energy she had lost over the years.
But there is not much you can do about degeneration, and there really was nothing available to us to get at the root of the problem, nor did we really know what the problem was.
About four or five years ago Rachael had come across some information on Ehlers Danlos Syndrome (actually, I think it was something her mom had come across as she was researching some of the symptoms and struggles Rachael had shared with her). As we researched EDS, Rachael went down the list of symptoms and was checking all of the boxes. These are not boxes you want to check.
While we now had an idea of the cause of some of the pain and degeneration, we still didn’t have a diagnosis and if this was EDS, there was no known treatment. It took a few more years before we had an official diagnosis of EDS, and with that in hand we at least had confirmation of the cause of so many struggles and pains. For anyone that has gone through something like this, you know how good it feels to finally have a diagnosis after longing to know and understand why you can’t do what you used to, why your body won’t heal after surgery, why even the lightest fall causes so much pain and damage and takes so long to recover, when others wouldn’t even remember that they fell.
Nothing we could find was really helping though. Numerous supplements, different therapies to just help her body function. Chiropractic and acupuncture and dry needling. Pretty significant regiments of vitamins and diet in hopes of giving her body the nutrients she needs to slow down and protect against the degeneration.
For years we have been doing everything we can to help her feel good and reduce the pain. But Even so, there have been so many horrible days of being in bed and not being able to do things because of the severe pain and headaches.
And then as we sat at dinner for our 15th anniversary, while talking a rib just popped out of place. Yeah, a rib. We finished dinner and packed it in so she could go lay down and try to get the rib back where it belonged. But, this was the beginning of what is now a regular occurrence of ribs moving and subluxating causing days of severe pain and suffering.
These strange pains and joint issues have been her life for longer than our marriage. And over the last couple of years it has become an almost constantly, debilitating struggle. We continue to lay this before the Lord and have been praying for something that would bring relief or healing. In God’s kindness we have discovered prolotherapy.
Imagine our disbelief when we first discovered this treatment and claims to be helping many like Rachael. As we researched prolotherapy, we found many with EDS like Rachael getting this treatment and finding almost instant relief from a lot of the pain. So we're very hopeful, it looks very hopeful! We found Caring Medical – Regenerative Medicine Clinics (caring medical ). They are treating many with EDS and they are seeing almost instant results. After digging into the therapy and seeing so many positive results we reached out and completed the initial evaluation and consult. The doctors there are confident that Rachael will benefit from this treatment and we are excited to finally have some relief.
Like almost everything we have done through the years, this is not covered by insurance, so we will have to pay out of pocket. The estimated total for the treatments including the optional treatments is around $40,000. This includes all of the travel expenses needed to go to and from the facility in Ft. Meyers Florida. The Lord has been good to us and we will likely be able to cover portions of this on our own, but definitely not all of it without putting off the treatment for some years to come. So, we are asking for help to get this done now, and any of the funds we don’t need we will pass along to someone else like Rachael that could benefit from the treatments at Caring Medical.
From Rocky, Rachael's husband of 16 years:
I'm not sure where to start. Talking about this is very emotional and difficult to do. For us it started 15 years ago after our first child was born. For Rachael, it was longer than that. She's been battling with this disease for her entire life, just unknowingly. Like many with Ehlers Danlos Syndrome, she also battles with various other illnesses that compound her daily struggles.
For many of the past 15 years we really didn't have a diagnosis. As her pain intensified, little tasks became harder and harder, and with each passing day Rachael became less and less of the vibrant and energetic woman I had married. As you can imagine, she was becoming so frustrated by the constant struggles to get through a day without pain, or a week without massive headaches that laid her out.
The road to a diagnosis has been a long one. It started with an MRI because of ongoing neck pains. That MRI showed that she had thyroid cancer and severe degeneration throughout her spine. When the chiropractor says “you have the neck of a 95 year old woman” you know things are not well. But he, nor any of the other doctors we saw could explain why.
So we treated the cancer.
We chose an alternative method to treating the cancer and that brought with it some major changes to our diet and an even deeper dive into what it really means to be healthy and give the body what it needs to heal itself. This treatment plan defeated the cancer, and also gave her back some of the energy she had lost over the years.
But there is not much you can do about degeneration, and there really was nothing available to us to get at the root of the problem, nor did we really know what the problem was.
About four or five years ago Rachael had come across some information on Ehlers Danlos Syndrome (actually, I think it was something her mom had come across as she was researching some of the symptoms and struggles Rachael had shared with her). As we researched EDS, Rachael went down the list of symptoms and was checking all of the boxes. These are not boxes you want to check.
While we now had an idea of the cause of some of the pain and degeneration, we still didn’t have a diagnosis and if this was EDS, there was no known treatment. It took a few more years before we had an official diagnosis of EDS, and with that in hand we at least had confirmation of the cause of so many struggles and pains. For anyone that has gone through something like this, you know how good it feels to finally have a diagnosis after longing to know and understand why you can’t do what you used to, why your body won’t heal after surgery, why even the lightest fall causes so much pain and damage and takes so long to recover, when others wouldn’t even remember that they fell.
Nothing we could find was really helping though. Numerous supplements, different therapies to just help her body function. Chiropractic and acupuncture and dry needling. Pretty significant regiments of vitamins and diet in hopes of giving her body the nutrients she needs to slow down and protect against the degeneration.
For years we have been doing everything we can to help her feel good and reduce the pain. But Even so, there have been so many horrible days of being in bed and not being able to do things because of the severe pain and headaches.
And then as we sat at dinner for our 15th anniversary, while talking a rib just popped out of place. Yeah, a rib. We finished dinner and packed it in so she could go lay down and try to get the rib back where it belonged. But, this was the beginning of what is now a regular occurrence of ribs moving and subluxating causing days of severe pain and suffering.
These strange pains and joint issues have been her life for longer than our marriage. And over the last couple of years it has become an almost constantly, debilitating struggle. We continue to lay this before the Lord and have been praying for something that would bring relief or healing. In God’s kindness we have discovered prolotherapy.
Imagine our disbelief when we first discovered this treatment and claims to be helping many like Rachael. As we researched prolotherapy, we found many with EDS like Rachael getting this treatment and finding almost instant relief from a lot of the pain. So we're very hopeful, it looks very hopeful! We found Caring Medical – Regenerative Medicine Clinics (caring medical ). They are treating many with EDS and they are seeing almost instant results. After digging into the therapy and seeing so many positive results we reached out and completed the initial evaluation and consult. The doctors there are confident that Rachael will benefit from this treatment and we are excited to finally have some relief.
Like almost everything we have done through the years, this is not covered by insurance, so we will have to pay out of pocket. The estimated total for the treatments including the optional treatments is around $40,000. This includes all of the travel expenses needed to go to and from the facility in Ft. Meyers Florida. The Lord has been good to us and we will likely be able to cover portions of this on our own, but definitely not all of it without putting off the treatment for some years to come. So, we are asking for help to get this done now, and any of the funds we don’t need we will pass along to someone else like Rachael that could benefit from the treatments at Caring Medical.
Organizador y beneficiario
Melissa Giglio
Organizador
Taylors, SC
Rocky Giglio
Beneficiario