• Jackie Ricciardi

    Staff photojournalist

    Portrait of Jackie Ricciardi

    Jackie Ricciardi is a staff photojournalist at BU Today and Bostonia magazine. She has worked as a staff photographer at newspapers that include the Augusta Chronicle in Augusta, Ga., and at Seacoast Media Group in Portsmouth, N.H., where she was twice named New Hampshire Press Photographer of the Year.   Profile

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There are 32 comments on Rite of Passage: Living with Chronic Pain

  1. 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.

    1. 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.

    2. 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!!

    3. 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.

    1. 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!

  2. 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.

  3. 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!!!!!

  4. 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!

  5. 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.

  6. 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.

  7. 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.

  8. 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?

  9. 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!

  10. 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♡

  11. 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!

  12. 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

  13. 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!

  14. 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!

  15. 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

  16. 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!

  17. 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

  18. I am so grateful to come across this article. My 17 year old was just diagnosed with EDS & POTS and is struggling to see what possibilities lie ahead with the right supports in place. I wish Kayla the very best in achieving her goals.

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