Belleville Resident Hopes Her Struggle With hEDS Can Inspire Others

BELLEVILLE, NJ — A person can look “young and healthy” and still be fighting a battle that leaves them in constant pain. That’s a big message that Katelin Mendez hopes she’s getting across by sharing the story of her struggles with Hypermobile Ehlers-Danlos Syndrome (hEDS).

Mendez, a 26-year-old Belleville resident, recently launched a GoFundMe campaign to help cope with her medical bills. See the fundraiser or make a donation here.

Hypermobile Ehlers-Danlos Syndrome is a connective tissue disorder that causes excessive joint hypermobility and an array of comorbidities. In Mendez’s case, it has led to Postural Orthostatic Tachycardia Syndrome, Nutcracker Syndrome (Also known as Left Renal Vein Entrapment,) Delayed Gastric Emptying/Various Gastric Issues, Raynaud's Syndrome/Phenomenon and Narcolepsy without Cataplexy – among other issues.

“I have been struggling with medical issues and complications my entire life due to hEDS but was only recently officially diagnosed about a year ago,” Mendez writes. “I finally had an answer to my pain; yet my body continues to show increasing issues and comorbidities as I get older.”

Through the campaign, Mendez is also hoping to inspire someone who may be in a similar situation – or knows someone else who is.

“I also wanted to say that just because someone looks young, healthy, or not particularly disabled does not mean they aren't struggling or in constant pain,” she says. “This has been a re-occurring thing that has been said to me by medical professionals and people throughout my journey and it is very frustrating to say the least.”

“We are all battling something,” the Belleville resident adds. “Whether it is visible or not.”

SHARING HER STORY

Here’s an excerpt from Mendez 's GoFundMe campaign, reposted with permission:

As a child, I was pretty active. I do not remember many of my symptoms during this time, but I do remember consistently being and feeling sick. I would always go to the school nurse and watched the other children outside play while I would feel unwell. I frequently bent and sprained my ankles and I always felt clumsy and uncoordinated. I was rather flexible and sat in weird positions that a normal human body normally wouldn't be capable of-- which I can still do to this day. hEDS causes flexibility and effects the collagen and connective tissues in our systems, making us usually abnormally bendy and stretchy; including our skin, tissues, organs, and blood vessels.

In high school, is when a few symptoms began to spike and really show itself. I started having many digestive issues. Chronic heartburn, pain, and slow digestion. A rare Pancreatic Rest was discovered causing a blockage and I had to have a major surgery to remove it and re-construct my stomach. At this current point in my life, I am pretty sure my hEDS has something to do with this earling finding but at the time thought it was normal stomach affair. The heartburn decreased significantly but I continued to have stomach issues. hEDS is known for causing gastrointestinal upset.

During this time, I also experienced a few episodes of fainting. However, during the time, my parents and I assumed it was low blood sugar and they would give me a fruit juice afterwards in attempt to help. I remember one episode in particular, I woke up from my sleep and stood up abruptly from my bed. I felt dizzy and my heart was racing but made my way to the bathroom. My father was awake and once I was done with the bathroom, I ended up passing out and hitting into the shower. My dad ran to the bathroom and picked me up, and I regained consciousness for a bit before passing out again. He brought me to my bed and laid me back down. I now know these are symptoms of Postural Orthostatic Tachycardia Syndrome (POTS,) a comorbidity of hEDS, which I have been diagnosed with in recent years.

The earliest memory of my actual pain starting was when I was just barely beginning college. During this time in life, we are going through a lot of changes and have many hopes and dreams for the future. Never did I think I would end up needing to leave college due to my worsening health.

I remember laying in bed and feeling an odd pain in my knees. My mother and I chalked it up to the air-conditioning in the house making my joints cold-until the pain continued to increase and spread throughout my body and other major joints. I went to many doctors during the time that told me it was growing pains (at this point I was already done with puberty,) and was consistently checked for many rheumaticalogical diseases of the body; at one point I was even almost diagnosed with Lyme-Disease. Yet, nothing completely matched up and the search continued on. hEDS causes chronic pain in joints due to consistent instability and loose unstable joints that sublux and dislocate.

I felt a constant chronic fatigue during this time as well. I didn't take it seriously until it began to effect my work and overall life. A sleep study showed Narcolepsy without Cataplexy. Only now do I know, hEDS can be comorbid with various sleeping disorders.

Due to the stress of my medical decline all while going through college and personal issues, internal conflict began to develop and I suffered an eating disorder for many years that sent me to residential treatment multiple times.

During my stay, I was in chronic pain always. I began to experience sharp pain in my abdomen and had to go to the hospital. Eventually, I ended up needed my gallbladder removed entirely. hEDS can cause many dysfunctions of the systems throughout our bodies. Bloating, nausea and stomach pain are frequent in individuals with hEDS and mast cell activation. Mast cell activation syndrome (MCAS) causes an inappropriate amount of mast cells to be dispersed throughout the body and can cause allergic reactions and can be the cause of some of these systemic dysfunctions. I have been diagnosed with chronic urticaria (hives,) in the past and high histamine. I also am allergic to dairy and sensitive to gluten and have many allergies due to this. My doctors suspect MCAS and I will be tested for it in the future. I have also been diagnosed with IBS, and delayed gastric emptying all attributed to my hEDS. This is just some of the complications with the gastric system, hEDS can cause.

My joint pain began to flare (as well as my other symptoms,) and I would always be confined to my bed and honestly depressed. I usually sleep with extra pillows to cushion my joints. I tried many things to solve the pain. Topicals, medications, etc. My bruising is very bad, and phlebotomists frequently complain of my veins moving easily; and I tend to bleed out for a while when I get a cut. All symptoms of EDS. No doctor could explain the exact cause and life was getting frustrating and tiring. I felt like a medical mystery most of the time, and it was really messing with my mental state and insecurities.

Throughout all of my diagnoses, I would do my own research because it came to the point where most doctors told me my joint pain was all in my head. I even had a doctor straight up tell my mother that I was crazy and causing the pain psycho symptomatically. However, I stood my ground and refused to believe that all the pain and suffering I had been through so far was made up and in my head. A lot of doctors don't recommend Google searching, but when you are desperate for an answer, you search for your own. I found Ehlers-Danlos Syndrome online and realized I had many of the symptoms and comorbidities associated with it. However, I read it was a rare condition and I pushed it to the back of my mind because- what are the chances I would have that? Turns out, Ehlers-Danlos Syndrome is more common than we think and it is under diagnosed.

After some time, I figured it wouldn't hurt to discuss the possibility with a geneticist. During the check-up with the nurse, she took my blood pressure and mentioned immediately that it was low and my heart rate was high- she wondered if I had a condition called POTS. The geneticist did not take that into consideration and began to examine me based on the Beighton Score; which is the diagnostic criteria for hEDS currently as there is no genetic test discovered for this specific type yet. During the time the Beighton Score was different than it is now. Yet even with my family history, he claimed he did not think I had EDS. I left there disappointed and lost without an answer yet again.

Due to me ending up being bedridden pretty often, I noticed a significant increase in my heart rate during this time when I would stand. I would often feel faint and sick to my stomach. I'd get clammy and cold fast and would need to sit, or lay on the ground and hug my knees to prevent from fainting. I had a fitbit during the time which tracks many things- one being heart rate. I noticed familiar patterns and abnormally large spikes, some as high as 165bpm- mind you, this would simply be my heart rate while standing or walking. Most individuals have a higher heart rate when exercising. I would literally be doing nothing and felt out of breath and ill. I remembered the nurse at the geneticist mentioning POTS, so I seeked out a specialist and was eventually diagnosed with the condition. About 80% of people with EDS have Postural Orthostatic Tachycardia Syndrome which is basically a form of autonomic dysfunction or dysautonomia. It is a disorder of the autonomic nervous system (things we don't consciously control,) and effects heart rate, blood pressure, sweating, body temperature, etc. While there, the cardiologist suggested that it sounded like I could have Ehlers-Danlos and to get a second opinion. Part of me was afraid because I had already been shut down before of the possibility, but I took it into consideration.

A while later, I found increasing pain in my joints while the weather began to chill/get colder. During a visit with a Rheumatologist, I was diagnosed with Raynauds Phenomenon when she noticed my hands were cold to the touch and white. It looked like I had no blood flow to them. She asked if it happened often and I replied during cold weather. My feet have the same issue too. Even holding a cup with ice in it can cause my hands to act up due to blood vessels constricting. This enhances my pain during winter months especially. This is a common comorbidity of hEDS. This is due to structural abnormalities in connective tissue, compromised collagen, and autonomic dysregulation as mentioned earlier.

I finally went to get a second opinion from another Rheumatologist. After explaining my symptoms and life-long issues, he proceeded to promptly ask about my family history and decided to re-evaluate me for hEDS using the Beighton Score and taking my own history and family history into account. He told me I definitely met the criteria and proceeded to do his best to help me with my pain, even prescribing a special medication that could only be formulated at a special type of pharmacy that creates medicines. Unfortunately, it didn't do much to help and I deal with chronic pain daily.

Finally- I had an answer to all of my daily problems and life-long illness. It all made sense and something in my gut throughout this process was telling me it was hEDS this entire time; but part of my mind refused to believe it, even after my official diagnosis. To this day, I struggle to believe I actually have this rare condition and carry the insecurity that it is all in my head from so many years of being shot down by doctors- even if I carry most of it's comorbidities and have so much proof of the condition.

Send local news tips and correction requests to eric.kiefer@patch.com. Learn more about advertising on Patch here. Find out how to post announcements or events to your local Patch site. Don’t forget to visit the Patch Belleville-Nutley Facebook page.