The Chronic Diaries: Hannah’s Journey with Chronic Conditions

Where are you based?

Originally Illinois, but now Texas (America).

What chronic condition(s) do you have? Please briefly describe what they are?

I Have several chronic illnesses including:

1. Hypermobility Ehlers Danlos Syndrome- This a genetic condition caused by my body not making collagen properly. Collagen is the molecular glue that holds everything together in the body. Essentially, I was born with Elmer’s glue instead of the normal super glue
2. POTS- This condition it caused by a malfunction of the autonomic system in the body. Everything that should regulate itself automatically in the body doesn’t therefore my heartrate goes to high and my blood pressure goes too low
3. Gastroparesis– This literally means my stomach is paralysis and no longer digest food properly on its own.
4. May-Thurner syndrome- My right iliac vein in my leg is squeezing the left iliac vein which causes the left one to collapse. This condition put me at higher risk for developing a DVT because I was 90% collapsed until I was put on blood thinners and had a stent placed to hold it open
5. Endometriosis- When uterine tissues grow outside of the uterus, it causes this painful condition. Usually, symptoms get worst around the time “aunt flo” comes to visit and during ovulation. 
6. MALS- This is caused by the median arcuate ligament squeezing the celiac artery. A lot of my symptoms of this condition overlap with the symptoms of gastroparesis.
7. MCAS- My body perceives non-threating things like grass and trees as a threat to my body and therefore it releases mast cells to help fight those things, but in reality, it just causes an allergic reaction.
8. Dyslexia- This is technically not a medical diagnosis, but this issue makes it hard for me to read (both comprehension and sound out words), spell, do math, and follow/remembering sequences.

What symptoms did you deal with before you were diagnosed?

I actually had fairly mild symptoms that mostly included dislocations, chronic pain, and mild GI issues. It wasn’t until I got a severe case of mono the everything spiralled out of control.

How were you diagnosed? What was your journey to diagnosis? (include dates/years if you so wish-it helps give people an idea of the long journey people go through)

I had my first operation to correct my dislocating knees when I was 16, but I wasn’t formally diagnosed with anything until I was 18. At 18 I began to have severe GI issues to the point I could no longer eat, I found a GI doctor that diagnosed me with Gastroparesis but he wasn’t willing to actually help me manage it. Thankfully, I found an amazing GI doctor quickly after him that take cares of rare patients. She was the one who suspected POTS and confirmed my Mom’s concern that EDS might be the cause to my issue. Therefore, she sent to a cardiologist and a geneticist where it was             confirmed through tests that I had POTS and hEDS.

Around 20 I started having allergies to a lot of things, which lead to the diagnosis of MCAS.

When I was around 21, I stopped responding to my POTS medications which led me to go through more medical test, one of which was a CT scan that gave me two more diagnosis, MALS and May-Thurner syndrome (MTS).

At age 23 I had a 3.5 inch long stent placed to correct my MTS and I’m waiting to be fully released from that surgery in April this year.

My last diagnosis is Endometriosis which I was just clinically diagnosed with and I’m waiting to undergo the laparoscopy to officially confirm it until I’m off blood thinners from my stent surgery.

As for the dyslexia diagnosis I was tested for it the 4^th grade after struggling with reading, spelling, and math. I still struggle with it today but have learned many tricks to overcome it and use it to my advantage.

Did this journey have an impact on your daily life? Eg, dropping out of college, quitting your job/getting fired? Etc

Thankfully, I’ve never had to drop out of college. There were many times that I had to reduce my workload or drop a class, but I was still able to have the “college experience”. With work, if I’m in school I either don’t work at all or work part time. When not in school I’m able to work full-time

Are you on any medications?

I take:

1. Desmopressin
2. Plavix 
3. Vitamin D3
4. Pyridostigmine
5. Dicyclomine
6. Domperidone
7. Corlanor 
8. Loratadine
9. Elderberry/Zinc vitamin

What side effects do you encounter, if any?

Fortunately, the current list of medication I’m on doesn’t really cause me any major side effects, but it has taken years to get to this point. The only major side effect I’m currently dealing with is weight gain.

What symptoms of your illness do you deal with on a daily basis (even when on medications)? How do you deal with these?

Brain fog, fatigue, chronic pain, and dehydration are my main symptoms I deal with every day. Depending on the day though I can deal with anything, GI pain, dizziness, headache, pelvic pain, palpations, hives, etc.

What occupation do you have? How does your illness effect your job/employment?

I just finished my Masters in Biological Sciences and a concentration in Health Science and I’m currently looking for a job in research until I’m accepted into medical school. Currently, until an opportunity comes up, I’m a private tutor and I’m starting my own business called Elegant Elements Jewelry.

How does your illness impact you mentally?

I would say it affects me less than it did when I was first diagnosed. I went through a pretty long grieving period after my initial diagnosis. I was an athlete one day and then the next I was too sick to leave my house, it was a hard period, but things are much better now. 

Is there any advice you would like to give to people who are on their chronic illness journey?

I think something that is often not highlighted in the medical field is that even if you have a rare, incurable condition healing can still occur. It looks different for each patient; for some healing means being able to get out of the bed in the morning and for others healing means running a marathon. It’s important to not compare yourself to others and wonder why they are ahead or behind you in healing but to compare yourself to yourself to reach your goals. Also, remember healing is not an overnight process and there will be times when you actually take steps backwards and you’ll have to take a break and figure out another way to make new baby steps. 

How do you encounter people having your illness? Do people understand? Are they ignorant? What level of difficulty do you have with this, if at all?

I have found most people are willing to learn. Sometimes they say hurtful things like “you’re too young for that” or “but you look really healthy” but for most they don’t understand the weight of those words because they’ve never had to walk in chronically-ill-with-a-rare-disease shoes. I tried to meet these people with grace instead of a reactive answer so they can learn and therefore more awareness is brought to my conditions

Is there anything you want to say to these people? Or the general public who do not have a chronic illness?

I would hope that they would understand the chronic illnesses are a roller coaster. Some days I feel fine and others I need to lay in bed all day and it’s really not up to me what the day will be like. During the low times, a simple text and a listening ear go a long way. 

Chronic Exposure Network