So Why Don’t You Just Take Collagen?

The story of Sarah

Hello from Sunny San Diego, CA, U.S.A! My name is Sarah Fulop, I am a 24 year old biochemist who is an extreme empath with perfectionist tendencies that piles ten things on her plate simultaneously. This is not always a healthy combination when you have a life threating genetic condition. It’s called Vascular Elhers Danlos (VEDS); it’s a mouth full I know.
Many doctors in my area have heard of EDS so their first question is: “so are you super flexible?” Here is my scripted response:
“No, that is hypermobile EDS. I have the scary vascular type. I have mutation in my COL3A1 gene which affects the collagen in my connective tissue causing a high risk of developing aneurysms, spontaneous arterial dissections and on rare occasions organ ruptures. I have had 8 spontaneous pneumothoraxes (lung collapses) in 2 years and have 3 small internal carotid aneurysms in my neck. My brother died twenty years ago at age 15 from a spontaneous aortic dissection and my sister died two years ago at age 27 from a papillary heart muscle rupture and aortic rupture 2 weeks having a baby and testing positive for VEDS, which is how I finally got diagnosed. Yeah it’s tragic and it sucks. I am pretty sure I am not having a dissection or major vascular event right now, but I pulled my left trapezius muscle last week and my left arm and neck has been spasming and I am really nauseous. My bother and I got sick last week and I been having these breathlessness episodes. I don’t think my lung collapsed but I have had episodes of lightheadedness. I am trying to not freak out but I am here to make sure I am not missing anything that really dangerous. These symptoms are most like a combination of pulling a muscle and getting sick which is heightening anxiety. ”
This is actually a conversation I had in the urgent care last month. I felt kind of stupid for going in with such vague symptoms but prayed that the doctor would be compassionate, take me seriously and not write off everything as anxiety. My medical rap sheet doesn’t exactly work in my favor on the anxiety account. A month later I had an actual panic attack but wore a heart monitor for 2 weeks just to double check my heart didn’t decide to rebel against me. Still waiting on results but I have had a stable few week :).
If you haven’t figured it out already, I deflect my fear through analytical processing and lightheartedness and a little sarcasm, because honestly the mental and medical trauma is sometimes so over-whelming. My doctors that have heard of VEDS can either treat me like a china doll or seem as if they want to wash their hands free of liability of me as a patient. I can count multiple times where a doctor or nurse did not believe me until a test would come back with the exact condition I told them I had. I am not trying to talk bad about the medical community because I have had some amazing providers. But I have real trust issues with the medical field I have to continually work through.
In the last 3 years, I was simultaneously diagnosed with an autoimmune condition and genetic condition, hospitalized 5 times (one being a failed lung surgery) and have had about 100 doctor’s appointments with a six week work disability all the while grieving the death of my sister and facing a global pandemic. If it weren’t for modern medicine I wouldn’t be alive. Our instinct to survive and our body’s capacity for trauma is actually kind of amazing.
If you haven’t picked up on it I am kind of an open book about my life. BUT IF ONE MORE PERSON asks me why I can’t just take collagen, I think I will actually punch them. I have to calmly explain that while collagen may help my skin, my body uses a defective code to processes any collagen in my cells. Basically, I know that I look young and healthy but the glue that holds my entire body together is much weaker than most peoples’. I can avoid contact sports and heavy lifting and take vitamin C and blood pressure medication but there isn’t much I can do to prevent an artery from dissecting whenever it feels like it. I have translucent veins and I bruise very easily. I understand that people with fair skin have visible veins but I have a patchwork of random bruises which it most likely from bumping into a table last week but honestly I don’t remember.
To be clear, I am not sharing this story to throw a pity party but rather give a glimpse into the not so uncommon experience of people who suffer from VEDS. I understand that every chronic condition is difficult in their own way and people that suffer from hypermobile EDS have a lot of painful and life altering symptoms they battle on a daily basis, which can also be devastating. But in all transparency the fear and PTSD of VEDS can be completely debilitating at times. It’s not only the exhaustion from battling a chronic condition, but also the constant uncertainty that this may be my last day on this earth. Really with all live with that reality, but my delusion that I am healthy safe young girl was shattered these past few years. I don’t mean to scare you but death is just a reality of this rare disease. It doesn’t necessarily get better, you just get better at managing and coping with it.
I want to emphasize that I strive to live a full life. I love my family, especially my 8 nieces and nephews! I have been to 12 different countries and travel to visit my Hungarian family every two years. I work a full time job and love talking to my compassionate and super educated specialists. I am not sure if this is healthy, but I get excited visiting my pulmonologist’s office, breaking through his awkward exterior and catching up with his lovely charge nurse Janet. My cardiologist and I constantly geek out theorizing about the possible biochemical mechanisms behind VEDS and the rapid tissue degradation which almost always seems to develop in emergency vascular situations.
I am not my medical condition, but it has shaped who I am and how I view the world. I have every intention to live a long and healthy life but am also at peace that my life expectancy may be much lower than most people. Honestly I am less afraid of dying as I am of not truly living. I ask God to lead me through the struggles of the current day and to not worry about what may happen tomorrow.
Although I would gladly trade the cards I have been dealt, I have found joy in the journey and connected with an amazing network of strong people who have quickly become lifelong friends. I have learned it’s okay to not be okay and that life is a tragically beautiful mess.
Thanks for letting my share my story. Sending love to all you medically unique people. I may not understand your condition but I understand the struggle .

0:14 / 9:42 CCommunity Voices: Sarah Fulop "My journey to a diagnosis of vEDS."