Help Meredith Grigsby Fight EDS
Donation protected
Our dear friend, Tiffany Hughes, asked us if she could help us start a fundraising campaign for Meredith's medical and travel expenses for prolotherapy, as it is not covered by insurance. This is one of the most humbling things we've ever done, but when your child is struggling with chronic, debilitating pain at 19, and you find a flicker of hope, pride doesn't seem to matter as much anymore. There are no words to express our gratefulness to her and to those who choose to donate, but we thank God for each person who joins us in this journey - whether financially, or simply lifting us in prayer.
Here is Tiffany's letter:
Not many people have heard of a joy-stealing disease called EDS, or Ehlers-Danlos Syndrome. I had not heard of it until Meredith's mom, Kerissa, told me of Meredith's diagnosis.
EDS is an inherited genetic disorder of collagen, the glue that holds our joints, muscles, and organs together. There are six subtypes of EDS, with the hypermobility type being the most common. What does this mean? It means that because your collagen is genetically malformed, you have frequent dislocations of your joints while performing what most consider normal, everyday actions. It's difficult to run, to walk, to lift, to live. It is obviously painful physically, but from someone who's walking in Meredith's shoes, I can't stress how emotionally painful it is as well.
People with EDS look fine. In fact, they have gorgeous, smooth skin. They're usually double-jointed and are excellent at gymnastics or dance because of their flexibility. The problem lies in the fact that they look good on the outside, but you can't see the instability of their joints on the inside.
Not many physicians in the immediate Alabama area are familiar with EDS, and if they are, the only "cure" they can offer is to mask the symptoms until the next joint dislocation. Life expectancy can be shortened with the vascular type of EDS, but all other forms have a normal life expectancy. For more info on the disease, you can go here and read more information.
As I stated before, most physicians treat EDS only by "band-aiding" the symptoms with medications, braces, and physical therapy. Kerissa, Meredith's mom, has been proactive during this entire process and has been determined to find a cure for her daughter so that she would be able to live a normal life. After much prayer and searching, Kerissa found a method unknown to many called "prolotherapy". Prolotherapy involves the injection of a solution of dextrose (sugar water) and a deadening agent into the affected joints that causes a small, local inflammatory reaction to take place. It is this reaction that calls the body's immune system to take action to heal the inflammation. This, in turn, produces more collagen in the areas where the collagen is defective. Prolotherapy requires several treatments for its effectiveness to reach its full potential. Here is a link to Meredith's physician's site that tells more about the prolotherapy process.
Imagine that you could see the light at the end of a long tunnel, but you also knew there would be a possibility you'd never reach it. That's the situation that the Grigsby family is in. Dr. Ross Hauser is an expert in prolotherapy and EDS and his office is in Fort Myers, Florida - a 10-hour drive away. There are so many costs that are involved with Meredith's rehabilitation, that I, on behalf of the Grigsby family, am asking for any help you may be able to give. The medical costs alone, since many insurances don't cover prolotherapy, are astronomical. Add the many drives to and from Fort Myers, FL, meals, and overnight accommodations, and costs continue to rise.
I can't tell you how Meredith, a young girl with her whole life ahead of her, feels either emotionally or physically. I can generalize it based on reported symptoms. What I can tell you is how I feel at the age of 43 having been diagnosed with EDS in March of 2015, two months after Kerissa mentioned it to me in a casual conversation on Facebook. I want to hide. I hurt so badly on some days that I cry. On other days, when I turn over in bed, my knees pop out of joint. I've learned, after 30 years of dealing with it, how to "knock" them back into place. I've had 2 strokes, the first at age 30, after my first child was born. The second stroke came last year. I'm a pharmacist and can't stand for more than 30 minutes at a time before I need something to rest on. I sleep sitting up because my lower back is in constant agony. I never picked up my third child and threw her in the air because I couldn't raise my hands over my head. This is my reality. I've lived a wonderful life with so many of God's blessings. If I died today, I'd be overjoyed with what God gave me, but Meredith still has her entire life to live. I can't imagine living that long in a body with her severity level.
So, that's what EDS is, but that's not what it has to be with the possibility of prolotherapy.
Please pray diligently for this family, as prayers for God to make a way and heal are coveted. If you're able, please give as God leads you.
Thank you,
Tiffany Hughes
Here is Tiffany's letter:
Not many people have heard of a joy-stealing disease called EDS, or Ehlers-Danlos Syndrome. I had not heard of it until Meredith's mom, Kerissa, told me of Meredith's diagnosis.
EDS is an inherited genetic disorder of collagen, the glue that holds our joints, muscles, and organs together. There are six subtypes of EDS, with the hypermobility type being the most common. What does this mean? It means that because your collagen is genetically malformed, you have frequent dislocations of your joints while performing what most consider normal, everyday actions. It's difficult to run, to walk, to lift, to live. It is obviously painful physically, but from someone who's walking in Meredith's shoes, I can't stress how emotionally painful it is as well.
People with EDS look fine. In fact, they have gorgeous, smooth skin. They're usually double-jointed and are excellent at gymnastics or dance because of their flexibility. The problem lies in the fact that they look good on the outside, but you can't see the instability of their joints on the inside.
Not many physicians in the immediate Alabama area are familiar with EDS, and if they are, the only "cure" they can offer is to mask the symptoms until the next joint dislocation. Life expectancy can be shortened with the vascular type of EDS, but all other forms have a normal life expectancy. For more info on the disease, you can go here and read more information.
As I stated before, most physicians treat EDS only by "band-aiding" the symptoms with medications, braces, and physical therapy. Kerissa, Meredith's mom, has been proactive during this entire process and has been determined to find a cure for her daughter so that she would be able to live a normal life. After much prayer and searching, Kerissa found a method unknown to many called "prolotherapy". Prolotherapy involves the injection of a solution of dextrose (sugar water) and a deadening agent into the affected joints that causes a small, local inflammatory reaction to take place. It is this reaction that calls the body's immune system to take action to heal the inflammation. This, in turn, produces more collagen in the areas where the collagen is defective. Prolotherapy requires several treatments for its effectiveness to reach its full potential. Here is a link to Meredith's physician's site that tells more about the prolotherapy process.
Imagine that you could see the light at the end of a long tunnel, but you also knew there would be a possibility you'd never reach it. That's the situation that the Grigsby family is in. Dr. Ross Hauser is an expert in prolotherapy and EDS and his office is in Fort Myers, Florida - a 10-hour drive away. There are so many costs that are involved with Meredith's rehabilitation, that I, on behalf of the Grigsby family, am asking for any help you may be able to give. The medical costs alone, since many insurances don't cover prolotherapy, are astronomical. Add the many drives to and from Fort Myers, FL, meals, and overnight accommodations, and costs continue to rise.
I can't tell you how Meredith, a young girl with her whole life ahead of her, feels either emotionally or physically. I can generalize it based on reported symptoms. What I can tell you is how I feel at the age of 43 having been diagnosed with EDS in March of 2015, two months after Kerissa mentioned it to me in a casual conversation on Facebook. I want to hide. I hurt so badly on some days that I cry. On other days, when I turn over in bed, my knees pop out of joint. I've learned, after 30 years of dealing with it, how to "knock" them back into place. I've had 2 strokes, the first at age 30, after my first child was born. The second stroke came last year. I'm a pharmacist and can't stand for more than 30 minutes at a time before I need something to rest on. I sleep sitting up because my lower back is in constant agony. I never picked up my third child and threw her in the air because I couldn't raise my hands over my head. This is my reality. I've lived a wonderful life with so many of God's blessings. If I died today, I'd be overjoyed with what God gave me, but Meredith still has her entire life to live. I can't imagine living that long in a body with her severity level.
So, that's what EDS is, but that's not what it has to be with the possibility of prolotherapy.
Please pray diligently for this family, as prayers for God to make a way and heal are coveted. If you're able, please give as God leads you.
Thank you,
Tiffany Hughes
Organizer
Kerissa Weeks Grigsby
Organizer
Prattville, AL