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Rite of Passage: Living with Chronic Pain

For Kayla Furbish (CAS’19), it’s about finding “the things that work for me”

BU recently welcomed 3,625 freshmen, each with a unique journey to campus. Photojournalist Jackie Ricciardi wanted to capture them as they prepared to launch this new chapter. So over the summer, she traveled from Minnesota to New York to Boston’s suburbs to photograph several members of the Class of 2019. They welcomed her into their homes and shared their dreams, fears, and the ways their families have shaped their lives. Parents spoke candidly about their anxieties and aspirations for their children. In our series “Rite of Passage,” BU Today brings you four students’ stories.

Kayla Furbish was 14 when she was diagnosed with Ehlers-Danlos syndrome (EDS), a rare, inherited connective tissue disorder caused by a defect in the structure or production of collagen or the proteins that interact with collagen.

Since then, Furbish (CAS’19) has had to deal with the daily joint dislocations, as well as gastrointestinal, cardiovascular, and neurological problems the syndrome causes. She’s undergone numerous surgeries, had infusions, and learned to live with chronic pain. Along the way, she’s had to give up a lot of things she used to do: tasks as simple as picking up a gallon of milk are now hard for her. And she says that because Ehlers-Danlos syndrome is outwardly invisible, she appears healthy even though she’s often sick and struggling to accomplish tasks most people take for granted. “I look just like everyone else,” she says. “I don’t have any outward differences that alert the public to my disability, and because of that, I often face judgment.”

When it came time to look at colleges, the Watertown, Mass., native knew she needed to stay nearby so she could continue to see her physical therapist and her doctors. Furbish says she knows there are going to be challenging times ahead as she struggles to keep up with everyone else, but she’s determined to “find the things that work for me.”

The double major (English and psychology) says she dreams of becoming a novelist some day, but will most likely pursue a graduate degree in psychology after graduation.

Kayla and her physical therapist work during one of her regular physical therapy appointments

Kayla and her mother rise before dawn every other week to go to Providence, R.I., for a 5 a.m. physical therapy appointment. Her physical therapist, Michael Healy, specializes in treating people with EDS. “Having doctors and people who are familiar with my case close by was a big reason I wanted to stay local” for college, says Kayla.

Kayla Furbish shows off her silver ring splints which stabilizes her hand and helps her to write and type easier

Kayla’s silver ring splints stabilize her hands and help her to write and type more easily.

On Ehlers–Danlos Syndrome
I try to hold everything together externally rather than internally because it’s not really there genetically.
Kayla Furbish
Audio — 50 Seconds

Kayla takes a practice run around campus to see if she's able to make it to her classes on time

Kayla takes a trial run before the semester begins to see if she can make it to her classes on time and that her backpack isn’t too heavy. “I know there’s going to be times that are challenging—like when I’m walking around campus and my knees or back are hurting, and I feel like I have to push myself to keep up with everyone else.”

Kayla gives her mom a thumbs up after doing a trial walk to class on the BU campus

Kayla gives her mother, Cindy, a thumbs-up after making it to class with a minute to spare.

On Challenges of Life at BU
I don’t want to start falling behind, or making myself sicker or injured because I’m trying to keep up with everyone else.
Kayla Furbish
Audio — 51 Seconds

Kayla Furbish in her bedroom

Kayla and her dog, Jake, at her home in Watertown, Mass. Living with EDS makes life challenging, but she's determined to work through the struggle. “I'm defintely excited to get to BU,” she says. “I can't wait to meet new friends, take classes that focus on what I'm interested in, and start working towards what I want to do in life.”

The Furbish family prepares dinner

Kayla’s father, Del, sneaks a taste of the dinner she and her mom are preparing before she leaves for BU. Kayla says she has to be very careful about what she eats because EDS makes it difficult for her to digest food.

On Worrying About Her Daughter
I worry about her falling apart.
Cindy Furbish(Kayla’s Mother)
Audio — 47 Seconds

Kayla and her dad share a goodbye hug

Kayla says good-bye to her father, Del, at BU. “It hasn’t really hit home for me yet,” he says, “because she’s going to be so close and we’ll get to see her often.” She’ll always have home to return to, he says.

31 Comments
Jackie Ricciardi, photographer and photojournalist
Jackie Ricciardi

Jackie Ricciardi can be reached at jricc@bu.edu.

31 Comments on Rite of Passage: Living with Chronic Pain

  • cynthia on 10.01.2015 at 7:36 am

    She is an inspiration for all!

  • Sarah G on 10.01.2015 at 10:11 am

    I hope your time at BU is fantastic, Kayla!

  • COM staffer on 10.01.2015 at 12:26 pm

    What a beautiful story! Thank you for sharing your life with us, Kayla. Good luck. Hope your thrive here at BU.

  • sandy on 10.01.2015 at 12:48 pm

    she is courageous and inspiring!

  • Kiran Milunsky, LICSW on 10.01.2015 at 1:57 pm

    A (free) support and discussion group is currently being offered for all Boston University area students with Ehlers Danlos Syndrome – held on the BU campus. Kudos to Kayla and all students with visible and invisible illnesses who take on the daily challenges of life on a college campus.

    • Cynthia Furbish on 10.01.2015 at 2:16 pm

      I agree!
      Kudos to Kayla and ALL of the students with visible and invisible illnesses. College life is a challenge…and much more so when struggling with other issues on top of it. How absolutely WONDERFUL to have a (free) support/discussion group. What an AMAZING offer.

    • Carolina García de Alba on 10.02.2015 at 12:03 am

      Is Really great that BU is doing this, and is great that Kayla shared her life with us, my 14 year old son and me have EDS, I didn’t know, and I’m an MD, never thought that all that cute weird flexibility tricks were due to EDS until Pablo started showing this same habilities, then I saw it! Yes, my son made me realize this wasn’t just tricks. The geneticist gave us the diagnosis and now a lot of things make sense. Thank you Kayla for helping create awareness!! Hopefully this awareness will extend to the medical
      community so this syndrome gets to be diagnosed when it should be.
      Go Kayla!!

    • Lori Conway on 10.10.2015 at 4:00 pm

      Is this group only for college aged students? My fourteen year old daughter has EDS and it would be great for her to meet others that deal with the challenges of having EDS.

    • Christopher Robinson on 10.23.2015 at 7:26 am

      Where and when are the discussion groups held? We’d like to know about that resource. Thanks!
      Email me us at access at bu dot edu.

  • Cynthia Furbish on 10.01.2015 at 2:11 pm

    Thank you Jackie for such a special piece. The pictures are beautiful. The finished piece is quite amazing!

    • Jackie on 10.01.2015 at 4:03 pm

      I’m so glad you like it, Cindy! Thanks to you and of course, Kayla and the rest of family for allowing me to share Kayla’s story. It was such a pleasure meeting you all!

  • Emma on 10.01.2015 at 2:29 pm

    What a beautiful article – I’m so lucky to know Kayla and the entire Furbish family. Much love to you all.

  • Karen on 10.01.2015 at 2:56 pm

    thank you for sharing your story. I also have EDS. It helps me to hear others story. I related to everything you said. My prayers go with you as you go to college. By the way I love your rings and splints. Take care and enjoy your journey.

  • sandra vota on 10.01.2015 at 3:21 pm

    Thank you so much for sharing such a inspiring story. I have a daughter with EDS, so I can relate to your daily challenges, she has just entered her first year of high school, it is a struggle for her everyday reading your story gives us hope for the future thank you, keep strong!!!!!

  • Betty Tulipano on 10.01.2015 at 3:53 pm

    Kayla is my great niece and I’m so proud of the woman she’s become! I admire her strength and determination! She always has a smile on her face no matter what pain she’s in!

  • Pam Middleton on 10.01.2015 at 9:24 pm

    Thank you very much for sharing, Kayla and for writing, Jackie!!! As a person who has EDS it helps us all when we get coverage like this. Kayla….. best of luck to you. I pray that your body allows you to complete your college dreams and beyond. Thank you again for sharing.
    There are more and more support groups being formed. There are several sites on Facebook for people who would like to vent or share or ask questions of others who also suffer.

  • Ali on 10.01.2015 at 10:01 pm

    Kayla, you are an inspiration for all with invisible illnesses. Thank you for being so courageous in sharing your story. I wish you the best during your college journey. You are a very strong young woman, with wonderful parents and a great adventure ahead! I hope you find BU a supportive and stimulating environment.

  • Linn Ash on 10.02.2015 at 1:25 am

    Great job! I am proud of you and the entire family. We just sent our 2nd EDS “baby” off to university too. She has multiple problems like this young lady but she chose a univ that is 14 hrs away! (Due to the major she wants)It has been extremely difficult for all of us.All our EDS Kids desperately want and deserve to have Great Lives. It is so hard!! We don’t want to ask for special treatments but no mistake- having the support and understanding of the professors, advisors, and their Peers is crucial to their success.
    We parents have worked so very hard to raise and nurture these kids and teach them to work as hard as possible in spite of limitations. I can’t begin to describe the intensity of how Much we care. Worry. Pray. Dream for our children. They want to grow up and pull away to be independent and not need us hovering over them.
    EDS isn’t a rare condition: chances are very high there are more on campus facing similar struggles but at a different level of severity. I hope your university continues to follow this beautiful brave girls progress and offer her as much support and encouragement as she needs.
    Good job Mom n Dad!! I Know how hard this is.

  • Red on 10.02.2015 at 2:57 am

    Wow! Best wishes to Kayla from a fellow EDSer. She certainly knows how to make those braces look stylish, effortless and edgy. BTW, where did she get those ring splints?

    • Cynthia Furbish on 10.02.2015 at 11:27 am

      Hi Red,
      Silver Ring Splint Company. The company is amazing and it was started by a woman with Rheumatoid Arthritis so she knows the plight (first hand). Here is a link to their company.

      http://www.silverringsplint.com/

  • Amy on 10.02.2015 at 4:56 am

    Thank you so much for sharing! I have EDS and it’s so hard to explain it to people. You have done so in such and eloquent and brave manner. Best of luck! You’re gonna love BU!

  • Jackie Tappe on 10.02.2015 at 5:10 am

    Wow,good luck to you and stay strong. Be kind to yourself and let others know how EDS affects you so you don’t harm yourself trying to fit in. I am almost 55 and a lifetime of being undiagnosed and trying to fit in has left me with a broken body and chronic pain. I hope you pursue your ambitions to become an author; reading is a pleasure EDS hasn’t taken away♡

  • Bailey on 10.02.2015 at 11:11 am

    Thanks, Kayla! I’m a grad student who was diagnosed with MCTD, another invisible illness affecting my joints. Though nobody can understand the effects of someone else’s illness to their own body, I certainly know the feeling of being stronger externally for the fact of not looking any different. Stay strong!

  • Lexie Smith on 10.02.2015 at 12:11 pm

    Kayla, all of us with EDS have to find a balance between what we want and the needs of our silly putty bodies. I am so proud of your courage and determination. You will succeed because you want it badly enough to face the pain. Here’s praying that the whole college experience is fun and you are able to achieve you dr
    Y

  • Jessica on 10.02.2015 at 1:29 pm

    Kayla, this was a very refreshing look at life with EDS, when many blogs sound dismally redundant (I too have EDS, so I can say that, lol). I love how you offered a glimpse of the daily struggles, but overall kept a hopeful tone about the future. It’s not all bad! College is tough, very very tough for us, but you seem to be smart and taking precautions, so I’m sure you’ll push through and stay safe at the same time. If you haven’t done so, definitely look into registering with disability services at your school to help with things like in-class interruptions, medical parking permits, etc. Those just about saved my life my senior year at LSU. Best of luck to you, my dear!

  • Meredith on 10.02.2015 at 7:54 pm

    As a fellow “EDSer,” I am so happy to see this article, and to know that people are being diagnosed at earlier ages. Stay strong, Kayla! And remember, it’s okay to ask for help. This is a lesson I’m still learning. : ) Best of luck to you!

  • Lisa on 10.03.2015 at 11:08 am

    Great article, Kayla is an amazing, strong, brilliant young woman. She great will and tenacity to persevere and pursue her dreams and goals. She is a great role model for everyone and anyone who has an issues that is so life changing to get up everyday and live life no matter what struggles you have. She is an inspiration. I am so proud of her! I see a lot of her Mother and Grandmother in her! XOXOX

  • Lynn on 10.09.2015 at 3:13 am

    Wow. I can’t stop crying. Beautiful, inspirational story. I thank God my three children are pretty healthy. To Kayla’s parents – It would be just as hard to let go, even without Kayla’s medical issues. I know. You are lucky she is intelligent and strong. To Kayla-good luck at BU; just be yourself. You are great!

  • Bethany on 10.11.2015 at 1:51 pm

    Once upon a time there was a new college student that was on our facebook page that went to the campus advisors because they will help students with disabilities. I wish I could remember what student it was and I know that the laws change from Canada to the USA but the university that she attended paid for one set of books for this student. One of the sets stayed at each of the classrooms that this student attended and the other set stayed in the students dorm room. This lightened the load that she had to carry drastically. Maybe this will help you? You mentioned a herbal heating pad that you microwave in your voice recording. They do sell battery operated heating pads. Could you put the herbal pad on the battery operated pad to heat it up so you don’t wake up your roommate? If you have any questions please join our facebook page EDSToday (news hurd around the world). New hurd around the world refers to a hurd of medical zebras. Clever, huh? There are so many college are students on our site and parents that could offer support and ideas. We would love to be able to help offer our love and guidance

  • kitty on 10.15.2015 at 11:24 am

    Kayla, Please don’t walk on or near railroad tracks!

  • Suzanne on 11.03.2015 at 7:22 am

    Kayla, you have always impressed me! Now you inspire!!! So do your parents!!! Best wishes and prayers for a successful Freshman year at BU!

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