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Oct. 27, 2015

TOPIC: Featured News, Patient Stories

Taking on NYC and a Rare Disease: An Introduction

Posted by Sophia Hanson

NORD-Student.Life.Blog

Sophia Hanson is a college student and has the rare disease, Lymphedema.  She is writing for NORD about the balancing act of going to college, moving away from home, and managing a rare disease.

Hi all,

My name is Sophia Hanson. I am currently a freshman at New York University. I grew up in Iowa the only child of two fantastic parents. I have been writing since I was eight years old, and am about to publish my first novel.

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Sophia and her father in Washington Square Park, NYC

I also have primary lymphedema.

Lymphedema is a medical condition that causes extreme swelling in the body. It can affect the limbs, torso, face, and genitals. It can be managed, but there is no cure. Lymphedema is permanent, and tends to worsen with age. The cosmetic issues aside the condition causes pain, infections like cellulitis, and in some cases can lead to disability. Though it is rare, there are some patients who have died from complications brought on by the disorder.

Lymphedema has multiple forms, which I will discuss in a later post, but is generally partitioned into two categories: primary and secondary. Primary patients are saddled with the disorder at a seemingly random point in their life.

My lymphedema showed up like an unwelcome guest one night after track practice. I was fifteen years old, a freshman at a boarding school in Chicago. I was sitting at my desk, my hair and clothes stale with early summer sweat, when I noticed a tightness in my left ankle. I peered down, my eyebrows knit in confusion. My breath froze in my lungs.

My ankle had ballooned to several times its size. The plump skin spilled over the edge of my sneaker, pale and fat. I texted my mother (a pediatrician) immediately. She called and asked me if I had sprained it. I wracked my brains, but could think of nothing. I iced and elevated it as she instructed, hoping it would calm down the next morning.

When I awoke it was even worse. Tender to the touch, and even more swollen. I limped through class and practice, waving off my classmates and coaches. I was sure the bizarre lump I once called my foot would soon release its bated breath.

As the weeks progressed, the fluid in my ankle calcified. It felt like a lumpy cast beneath my skin, as if it was actually made of plastic or tough rubber. Nothing could curb the swelling. I went home for the summer without answers.

It took six months, five doctors, three MRIs, a cast, and a vast array of medical tests to diagnose my lymphedema. It was my mother and her partner at her clinic who figured it out. At first, I was relieved to have a label for my strange affliction. I was given compression garments, which I wore begrudgingly. They were hot and scratchy in the summer heat, but the swelling in my ankle receded considerably. Still, each time I removed the garment, the swelling came crawling back. The root of the problem was still there.

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Sophia during a family ski trip.

I think a part of me assumed this bizarre affliction would eventually go away. I knew logically that the edema was permanent, but I did not want to think about it. I refused to think about it.

It was my mom who pulled me out of my denial. I remember sitting on the floor of my room the night before I was to leave for the start of term, my mother kneeling next to me. She further explained the mechanics of the disorder, the seriousness of it. The fact that if it went untreated it would swallow me up. That even if it was managed it might get worse.

I fell into a deep depression. I was terrified. I began to research lymphedema constantly, which was in some ways the worst thing I could have done. If you Google ‘lymphedema’ the first thing that pops up is a magnificent collection of all the worst cases. The patients with elephantitis, cellulitis, open wounds. The ones who can barely walk their legs are so swollen. My own leg looked fairly normal. The garment was doing its job. My ankle was swollen, sure, but not mammoth. From afar I could pass as normal, but how long would that last? How long it ballooned, or spread from my leg to my stomach, my gentiles, my arms, my face? It was a waiting game, and I was losing.

I did not start to improve mentally until I went to the Foldi Klinik in Germany. Foldi is a hospital dedicated specifically to treating lymphedema patients. It is perched on a mountaintop deep in the Black Forest and looks out over the beatific village of Hinterzarten. Honestly, I could not imagine a more idyllic place to be treated for a chronic disorder.

I had the privilege of staying at Foldi for two weeks the winter of my sophomore year. The intense therapy allowed me to shed half a liter of fluid from my left leg. From afar, my legs were almost indistinguishable. I was fitted for custom compression garments that would help hold these gains in place.

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Sophia and a friend at High School graduation; styling her compression wrappings!

This was all wonderful, but the biggest change was in my own mind.

When I was first diagnosed, I thought I was destined to be disabled and disfigured by the time I was thirty. I learned this was not the case. I met many thirty, forty, and even eighty year olds who had battled lymphedema their whole lives and lead full, relatively normal lives. I felt like I could finally breathe again.

I would be okay.

I have been living with lymphedema for almost five years. It is difficult. It is tiring. It will never leave me alone. But it is also manageable. I am ruthless in my self-care. I am in the best physical shape of my life, and am loving college in the city that never sleeps.

A lot of people have told me that everything happens for a reason, which I find ridiculous. There is no divine purpose or punishment hiding behind any disease or disorder, rare or common, mental or physical. There is no grace in our afflictions, but there is grace in how we handle them. There is power in the way we heave ourselves up and tread on.

 

Love,

 

Sophia

19 Responses to “Taking on NYC and a Rare Disease: An Introduction”

  1. Grace Cho says:

    I LOVED THIS POST. I had no idea you were living with such a mean condition. You have such a way with words, and I am inspired by the way you handled your situation. Thanks for this writing. It was beautiful. I hope you’re doing well, Sophie!!! 🙂

    Wishin’ for the best,

    Grace

  2. Anita Gribben says:

    Hi Sophia
    I hope you are loving college and NYC. We sat with you at the NORD Gala with our son Bailey. We live on Long Island and Bailey is loving his freshman year at RIT in Rochester. If you ever need anything let us know. I look forward to following your blog.
    Please tell your Mom I said hi.

  3. Jane Duvick says:

    I loved reading this. The last two sentences were my favorite! I believe you are amazing.

  4. Aileen Tobin says:

    “There is no grace in our afflictions, but there is grace in how we handle them.” Love that line!

  5. Lisken Sherman says:

    Excellent post sophie! I’m r outing
    F or and praying for you.
    Lisken Sherman

  6. Kathleen says:

    Thanks for sharing your story Sophia. I have had this since my late teens and am 66. The worst thing for me is that I passed it on to my youngest daughter…….you hope you only give your kids wonderful things. My daughter is faithful in wearing her stockings and keeping active. She was diagnosed in her mid 20’s and in fact, that is when I finally had a name for it…….after she had many doc visits and various tests to confirm it.

    Hang in there.

    Kathy Phillips

  7. Janet Hartje says:

    I have lymphedema as well. It took me 25 years to get some help. I really hate these two sayings “God, doesn’t give you more than you can handle”. And “Everything happens for a reason”. Both are designed to make you feel worse. Just put your fingers in your ears and make noise of your own. They probably still won’t understand but it might make you feel better.

  8. Brian Runge says:

    I have lived with this for ten years, it sucks. My legs are ‘stained’ black, always battling some kind of swelling. My legs used to be toned & tanned, I even once got a job just because I had such nice legs, lol. Now I sport compression hose, and stares from wonderous eyes. Just dont let it over come you, keep strength in your legs. Keep them as healthy as you can, be cause infections can bring you down quickly. Good luck to you!

  9. Ruth Tisher says:

    I also have primary lymphdema. It showed up when I was 4 years old. It is congenital. My mother had lymphdema and so does my son. I keep it under control by wearing Juzo compression stockings during the day and use Lymphapress pump boots at night. I am a paraplegic and am in a wheelchair during the day. I would like to know more about the hospital you went to in Germany. My email address is: ruthtisher@yahoo. com

  10. Anita pntozzi says:

    Thank you for this story. I too have lymphedema. Your words were inspiring

  11. Tracy Jones says:

    Thanks for sharing. I have 3 rare diseases not including lymphedema, they still can’t figure out how mine started and I am still having trouble getting the help I need. I believe that my whole left side including stomach is affected

  12. Angela ;) says:

    Bless you… I have it in my left arm due to breast cancer! Ugh! I feel your pain and discouragement! Dealing with it everyday is hard… ?

  13. I went five years before being diagnosed. I’m 70 years old. I cannot walk without a walker. It’s painful and debilitating. I have it in both legs. I use compression boots,and they help a little. I have very painful flair ups. Drs. Don’t seem to be very knowledgable. My lifestyle has completely changed. Depression comes with it. Weight gain, makes it worse,but not being able to exercise, is the culprit.

  14. valeri says:

    Thank you for sharing. How did you/they remove a liter of liquid from your leg & how was that determined?
    Blessings for you …

  15. Lauren Griffin says:

    It’s a relief to read something written by another 20-something year old who is raw with how she feels. I went through the same feelings of self hate and cosmetic dislike for my legs. But life goes on. Being oka with lymphedema is 50% mindset. So many feels from this article ♡

    Lymphie strong
    Lauren

  16. nedra mcnamara says:

    God bless you, Sophia, for your courage in fighting with your disease!? I think it helps to talk,write about life’s challenges! I like to put words on paper about what bothers me, it seems to clarify my thoughts. I will keep you in my prayers.:)

  17. Ashia Watkins says:

    I understand her I’ve been living with the disease for ten years. I wear my compression hose in the summer as well as winter also. I have suffered from depression a lot.

  18. Cheryl genovese says:

    Wonderful and beautiful story, nice to know we share the same boat and we all keep sailing on regardless our incurable disease. We must all be strong together❤️

  19. Stan Shaffer says:

    If lymphedema were my only problem, life would be considerably easier. Having advanced type 1 diabetes and many complications, a few doctors have been totally overwhelmed and therefore condescending. Being told many disparaging remarks like “give up hope of ever working again”, or told that “I’m too complicated a patient to treat”, have led to severe depression. A favorite was ” get used to the pain since it will only get worse”. Wasn’t the Hippocratic oath meant to do no harm? Instead, it seems totally hypocritical. In my opinion, our entire healthcare system is in disrepair.

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