About my disability – Arthrogryposis

Since Arthrogryposis Awareness Day is coming up on June 30, I wanted to update this old blog about what it means to be a 30-year-old woman living with Arthrogryposis in this world.

What can you do for Arthrogryposis Awareness Day?

I’m going to make a video this year like I did last year. Each June 30, people are encouraged to wear blue to show support for people who were born with the condition and the need to educate people about it. We don’t have a celebrity spokesperson throwing charity events to raise money and pressure medical science to do more research for more effective treatments. I’m asking you to wear blue on June 30, take a picture or video of yourself and send it to me at jessicajones9828@gmail.com so that from there, I will put your contribution into a video. People have gotten creative before with blue nail polish, blue ribbons, blue hair streaks, or anything else if simple blue clothes don’t interest you. If you choose to send a video, please tell people why you support Arthrogryposis Awareness Day. My final video goes to www.amcsupport.org and YouTube to continue efforts to raise awareness. AMC Support also takes donations to help families with children who have this condition, if you can spare a few dollars. And please pass this blog around to your friends and encourage them to participate as well. Last year I had 150 participants. I’d like to see more this year.

What is my life like with Arthrogryposis? An honest look.

I realize that not everybody is comfortable with asking questions about disabilities even though most of us with disabilities prefer it that way. For me personally, I’m a blunt person for the most part, so I would rather people just ask what’s on their minds rather than stare or wonder about this or that like having a big elephant in the room. I prefer people get their curiosity out of the way quickly so we can get on with knowing me the person inside without my disability being this thing overshadowing me. People commonly say they’re afraid of offending me. I totally understand that. I would be afraid of offending me too if I was in other people’s shoes. There’s no need for fear with me though. I’ve been asked everything from, “How do you write?” to, “How do you have sex?” so nothing offends me anymore.

This is the truth on my disability. My diagnosis is called Arthrogryposis Multiplex Congenita but I just call it Arthrogryposis or AMC. Here is the basic explanation of it from WebMD.

Arthrogryposis Multiplex Congenita, a rare disorder that is present at birth (congenital), is characterized by reduced mobility of many joints of the body. Impairment of mobility is due to the overgrowth (proliferation) of fibrous tissue in the joints (fibrous ankylosis). There are many different types of Arthrogryposis Multiplex Congenita and the symptoms vary widely among affected individuals. In the most common form of Arthrogryposis Multiplex Congenita, the range of motion of the joints in the arms and legs (limbs) is limited or fixed. Other findings may include inward rotation of the shoulders, abnormal extension of the elbows, and bending of the wrists and fingers. In addition, the hips may be dislocated and the heels of the feet may be inwardly bent from the midline of the leg while the feet are inwardly bent at the ankle (clubfoot). The cause of Arthrogryposis Multiplex Congenita (AMC) is unknown. Most types of Arthrogryposis Multiplex Congenita are not inherited; however, a rare autosomal recessive form of the disease has been reported in one large inbred Arabic kindred in Israel.

This is my reality:

Arthrogryposis is really a term that covers about 150 different variations of those symptoms. Most people with Arthrogryposis can walk a little bit with a walker or totally unaided because most types of the condition only affect the arms OR the legs but not both. My case is particularly rare in its severity because both my arms and legs are fully affected. I cannot walk at all, nor can I use my hands enough to function in everyday life. I also did not have proper medical care as a child because I was born about five years before doctors figured out the best general course of treatment for this condition. Since this condition affects bones and connective tissue, it’s best to get the brunt of your corrective surgery as a child before everything is fully formed. I missed that window of opportunity in a lot of ways so corrective surgery is not quite as affective on me and it takes longer for me to recover as I get older. All of that is why my case appears more severe than most.

I have lost count of how many surgeries I’ve had. It’s somewhere between 15 and 20 but I truthfully don’t know the exact number. Some surgeries were a matter of life and death while others were experimental attempts at giving me more mobility. I’ve had a complete spinal fusion from neck to pelvis, meaning there are two titanium rods wired to my spine that split off across my pelvis and that makes it difficult to bend at the waist. I’ve had hardware put in and taken out of my hips. My thigh bones have been surgically broken and repositioned for more mobility. My feet have basically been rebuilt to correct the clubfeet, which is regressing and I need another surgery there. Those are some of the more serious surgeries I’ve had in the past. Sometimes I can be very self-conscious about what I wear because I don’t want people to see my scars, nor do I like to show off my body because it only reminds people that I’m “different”. As I get older, it’s getting easier to be comfortable in my own skin because I know I have value as a human being and I have a quick wit and a clever mind. There are differences with my body but I’m still a woman with all of the hopes, dreams and desires that any other woman possesses.

I live with pain every day. My feet and hips are especially troublesome because of the bone deformities and early onset of arthritis. It can be challenging because my mind and heart are adventurous and I want to experience everything in the world but sometimes my body doesn’t cooperate. That’s par for the course with this life though and I roll with things on a day to day basis. I do not accept no as an answer when I’m told I can’t do something. I’m the kind of person who will do a thing three times over when I’m told no just to prove I could do it. Adopting that stubborn attitude early on is the reason why I have learned to fly on my own without companions, I’ve gone horseback riding, I’ve gone whitewater rafting, I’ve swum in the ocean many times, I go on cruises, I’m a Civil War reenactor, I’ve camped everywhere from the Rocky Mountains to the Blue Ridge Mountains, I’ve seen 32 states, Canada, Mexico and the Bahamas, and so on and so forth. I’m not designed physically or mentally for a 9-5 job, so I’ve carved a life for myself as an author, an artist and a spiritual intuitive.

Despite the daily thoughts about having to adapt everything, I’m a perfectly normal woman. I need help doing some things like getting dressed and bathing but I do a lot more on my own than people think. Since I can’t use my hands enough to call it function, I do things with my mouth. I have the ability to write, draw, type, sew, needlepoint, use scissors, tie knots, etc., etc., etc., all with the various tools in my mouth, which has become the butt of jokes over the years but you’ll notice most of the jokes come from me first to put people at ease. If you do it with your hands, I find a way to do it with my mouth. People often ask how I learned all these skills. I taught myself through trial and error starting from infancy. My family never treated me like an invalid so I had to learn to do for myself very quickly. The body’s ability to adapt is amazing when you think about it.

There are a lot of misconceptions about me and this condition.

The main misconception is that people think I’m like Christopher Reeve, who had no sensation in his body. I am not a spinal cord injury, so I have full sensation throughout my body except for some numbness in my right hand due to an overzealous surgeon who caused nerve damage. The truth is I have a heightened sense of touch. That applies to both pleasurable sensations and painful sensations. I have a very high tolerance for pain because of it. Whether my heightened sense of touch is related to my disability or my work as a spiritual intuitive is unclear. It may be both.

The second big misconception is that I can’t move at all. Not true either. It looks that way because most people see me in the wheelchair, which is actually a lot more limiting than not being in it. Think about it – you’d be more limited strapped to a chair too. I spend the majority of my life out of the wheelchair and only use it when I’m going somewhere. I sit on couches or living room chairs just fine, but most of the time I’m lying on my stomach so I can move around and be independent. The amount of help I need is really minimal when I’m not in my chair. This is far from a round the clock nursing care situation. In fact, I feel suffocated if I’m around people trying to do everything for me too much.

The third big misconception is that I’m not capable of being in a relationship and all people with disabilities are asexual. Absolutely not true. I’ve had longer relationships than most married people I know. I was engaged for a while but the relationship was abusive, and after a miscarriage, I left him. There is a plus side to being disabled when it comes to relationships – vain people only interested in you if you’re “hot” will avoid you and you can avoid that drama. This is not to say people with disabilities aren’t hot – far from it! – but the vain types aren’t capable of looking beyond the chair. I prefer men to be strong, stubborn men with depth and intellect who have passions and interests beyond clubbing and impersonal sexual encounters. Those are the only men I will consider and they are the only ones capable of seeing the woman beyond the chair. Don’t ever settle for less than what you deserve!

I live with Arthrogryposis but it does not live my life. My wheelchair is part of me but it is not ME. I have had boyfriends, I have been engaged, I have been pregnant, I have survived abuse, I travel, I publish books, I help people in spiritual matters, etc. I have the same thoughts, desires and feelings as any other woman. Sometimes I have to adapt the way I do things, but I do, and I get on with life. The majority of people with disabilities are stronger and more driven than anyone else you’ll ever know, so there is no reason to be afraid of beginning a friendship or more with us.

Above all, don’t be afraid to ask questions. It’s better to speak up instead of standing around feeling awkward, especially in my case, because your awkwardness will make me feel awkward. Nothing offends me anymore because I’ve heard it all. I don’t believe in beating around the bush, so say what you mean and mean what you say, and we’ll get along fine.

So there you go. A closeup glimpse of life with Arthrogryposis.

29 responses to “About my disability – Arthrogryposis”

  1. MoonDog says:

    >my daughter has AMC and is affected in arms and legs. I didnt realise it was so rare for both sets of limbs to be involved.

  2. Anonymous says:

    >omg i thought i was th only one with the being blunt lmao hi my name is chantelle and im 25 and i was born with arthrogryposis too. My conditions isnt as bad i can walk on my own and have full use of my hands but my movement in my elbow on the right is limited and my left ankle is fixed. But its nice to read what you wrote, i have always wished people would ask me instead of making up stuff on there own. And im in pain all the time my hips, back , tailbone, fingers and just about anything else you can think of. But like you i have lived my life on my own terms i drive i was in marching band , a dancer and a flag girl. I just want you to know it was very nice to come across your page, I would love to email you sometime and talk

    • Paula Taylor says:

      Hi my name is Paula, my daughter is 18 and she has arthrogryposis. She has done really well her whole life doing things for herself her way. She has done sports, soccer and cheer leading . She graduated 2 years before she was suppose to and is in collage for nursing. Cheyanne has had many many surgeries. Her ankles, wrist and arms are effected. She has had many many surgeries. Her wrist and ankles give her pain all the time. I have a few questions for adult women with arthrogryposis is some wome could email me ptaylorcna@yahoo.com or facebook me Paula Glaser Taylor Thanks!

  3. Anonymous says:

    >Hi my names Pam and I just wanted to talk to someone. My sisters got Arthrogryposis it feels great not to be alone. It was really hard when she was born but we are getting through it shes a 3 year old sweet heart she has improved greatly from birth and I hope she keeps improving. I would love t oemail you some time and talk.

  4. Anonymous says:

    >Hello my name is Kiera. I myself also have AMC and I am 12 weeks pregnant. I really have no clue of what I'm about to face. My OB is also really unsure of what will happen. All she thinks so far is it will be very uncomfortable (more than "normal"). I have tried to do my own research on being pregnant while having AMC but all I can find is info of what my mom went through… I came across your page and thought maybe you can give me some advice. I have a myspace which is kiera720 also my email kiera720@hotmail.com. I would really apreciate if you would get back with me thank you.

  5. Anonymous says:

    >hi my names Katherine. Im 20 years old and have arthrogryposis. I was wondering if its possible for me to get pregnant. If anyone has any knowlegde of this please email me at k_quinn90@yahoo.com

  6. Anonymous says:

    >Hi! I am Jen and 28 with AMC. I am also interested in the effects of pregnancy. I have AMC in my arms and legs as well. Would love to hear more!

  7. Claire says:

    >Hi im Claire im 27 and also have AMC. It affects my hands, arms, legs and feet. I can walk unaided most days. i also am 'trying' to get pregnant and have been tried to find info on AMC and pregnancy and have found very little until i found your blog! It would be great to chat to someone who also has AMC! If you would ever like to e-mail my address is Girley25@hotmail.com. Thankyou. xx

  8. Anonymous says:

    >Hi my name is Tara & I also have AMC & I'm 32 yrs old. It has affected my hands, arms, legs & feet. The worse part is the limited use of my hands & arms — but just like you i have also adapted to many task my own way. I can walk unaided b/c of all of the surgeries I received as a child to correct my condition — I still have a problem with my right foot but all in all the surgeries were a success.
    I know you mentioned that you were hoping doctors in NY will be able to help you so i was wondering if you were able to make any progress with that? I know you have been speaking about your experiences & struggles with your clubfeet but i wasn't sure of whom or where the doctors were from. I went to The Hospital for Special Surgeries in Manhatten & i was wondering if you are able to reach them to maybe help you with your clubfeet.
    I would like to say that I admire your courage & understand your struggle. I enjoy reading your blogs & I feel a connection to what you say & how you feel. I wish you all the best. XoXo
    P.S. I am also a huge NKOTB fan!!

  9. ojoscri5talin0s says:

    >Hi, I also have AMC and also adapted to do everything with my mouth. I've been married for almost 4 years now and I am looking forward to having children. My buggiest fear is that I can pass on my condition to my baby. I'd like it very much if you could give me some advice. There is so little info online. My e-mail is ojo.d.cristal@gmail.com

  10. Jessica says:

    >Check out my blog…jessicasvent.blogspot.com. I have arthrogryposis and I am pregnant. I started the blog so that I can share my experience!

  11. Anonymous says:

    >Oh my goodness. Can't believe i have found this website. I am 21 and have AMC. I can walk but very little. My hands are twisted and I too have had that operation on my spine. Of course I have had many others too. I was also curious to how possible pregnancy is. Please email me on anacrome@hotmail.co.uk. Or add me on Facebook. Ana crome. It would be nice to know people who have similar difficulties. Xx

  12. Jim says:

    I was born in 1952 with Arthrogryposis along with club feet. My first 8 years I was in and out of traction and casting. Then in 1960 the doctors started surgery on both feet. In 1964 was my last surgery which was a triple arthrodesis on my right foot. All these years have passed and now I’m experiencing chronic pain, if I sit to long my muscles and joints tighten up and have a difficult time getting up out of bed or a chair. I use a walking stick to help my balance.

    • Daniel Stallsworth says:

      hi im 50 year old male I to have problems now with crinic pain I wonder why some do some don’t I struggle every day suffrer rom depression and hide from people now will I get over this no one will hire me im glad to here allot of you on here have great family saport I wish I did I to have had hand surgerys foot surgerys my wrist but it is really nice to see allot of you on here have a full filled life does any one here haft to take medication from this condition all the docter here want to do is give mre meds god bless all of you with this condition

  13. Edain McCoy says:

    Dear “Little Ma” (Jessica),
    Thank you for the full discussion on Arthrogryposis. I didn’t know it covered such a broad range of conditions. One of my Pagan Sisters (from my hometown) is Deaf, and I’ve learned through her that asking and gaining knowledge is preferable to anyone with a “disability” than silent ignorance. Expanded awareness helps us find the unity in our diversity, Paganism’s and the Americas’s greatest strength. Like you, my hometown friend is an amazing, talented, intelligent woman who lets nothing get in her way of living and I am blessed to know you both. I’m painting my toenails blue and will wear the color on the 30th for you and others with AMC.
    Love, Edain (G)

  14. My Dear Jessica!

    I looked up your condition when we first met, and now I know how you live with it. What an inspiration you are! I so hope that you’ll at least get relieved of some of that pain!! If you ever come to visit me, we’ll both have a good time reclining on couches!

    All my love, Linda

  15. Stacy says:

    Thank you.

    My son just turned a year and is affected in his legs and arms. Though his arms are starting to come on better. We are at the doctor 2,3, 4 times a week and it gets frustrating. But it is good to hear that as an adult there are people living with this condition who lead independent lives and that one day all this work will be worth it for him.

    Thank you again

  16. Lacie says:

    I am another statistic for AMC. Its amazing how many ppl AMC affects and how there’s so many different types of AMC. Hi Jessica! It was a pleasure reading your blog,and I’m also amazed that are so many blogs about living with AMC.
    I currently have been dealing with AMC all my life, but definitely not to the extent that you have. AMC affects me in the fingers(all fingers except my thumbs do not fully extend), my feet, and the tightness in my legs. I have been through countless surgeries growing up as a child.

    I also have a identical twin sister who is also affected by AMC. I will admit, that my AMC is slightly more severe than my twins. In our infant and child years, we were really bad off. I was in the hospital for 6 mos, while sis was in hospital for 4 mos. As we got older, our conditions seem to become less mild.

    The only problems I have now living with AMC is the deformatities in the feet(Its hard deal with and have never publically worn sandals),increasing tightness of the joints ( I try to workout and stretch throughtout the week), and ear infections. I have a cleft palate, which caused fluids in the ear to get backed up in the ear canal. I once had a tube in my ear that was removed, and now all of a sudden I keep getting ear infections which is common for ppl with clef palates. But honestly, now no one would ever know that I suffer from AMC unless I tell them or someone notices my hands.

    I want to thank you again for your words of wisdom and encouragement. We both are truely blessed to be here on earth and enjoy times with friends and family, and also be able to live the life you choose. I hope and pray your journey gets better as you get wiser and older. Thanks again. You can look me up on Facebook by the name Lacie Cash and send me a friend request!

    God bless you Jessica,

    Lacie Cash

  17. Hi there just wanted to give you a quick heads up.

    The words in your article seem to be running off the screen in Ie.
    I’m not sure if this is a formatting issue or something to do with internet browser compatibility but I figured I’d post to let you know.
    The layout look great though! Hope you get the issue resolved
    soon. Cheers

  18. DEBBIE OVERTON says:

    MY NAME IS DEBBIE, I HAVE AMC, AS WELL. IM MILDLY AFFECTED, I WALK,ETC. ON MY OWN, AND HAVE FULL USE OF MY ARMS, JUST MY LEGS ARE AFFECTED.

  19. […] Identity and Personal Narrative: Kayla Whaley – Disability, Self-Esteem, and Sex; About my Disability – Arthrogryposis;  […]

  20. kristina says:

    hi my name is Kristina. I am 40 yrs old and I was born with arthrogryposis. I have had 28 surgeries before I was 12. most of those were just so I could walk. I was born with my left hip out of the socket. my left leg is now 3inches shorter then my right one. both are of my hands were affected. I also have a permanent locked jaw. plus I have scoliosis of the lower lumbar. up until the last 4 years I was able to walk a short distance, now I have use a mobility scooter just to be able to enjoy life. I have not met anyone else with arthrogryposis in person before.

    when I was first diagnosed the medical field referred to arthrogryposis as “SINCLAIR SYNDROME”

  21. Leandra says:

    Hey There

    My name is Leandra Ferreira from South Africa and I have AMC. I can walk a little, as you, I also need help getting dressed and undressed. I have a full time job as an administrator 8-5. My pride and joy is my 6 year old son.

    Hope to hear from you.
    Leandra

  22. Marie says:

    My name is Marie and I’m 25 with this condition. I don’t usually talk to anyone about it because its such a touchy subject. My legs are perfectly fine but I do have a limited range of motion and my right hand is a little bent. I work 2 jobs and I live on my own and take care of myself. Ive never felt comfortable talking about this to anyone. I would really love to speak with someone that has this disability. I want kids but I don’t want a child to go through what I went through and what I continue to go through.

    • Matthew sanicola says:

      If you need to talk to someone you can always email me. I have athrogryposis in my hands and now I have a spinal fusion. It’s always been something I have tried to not bring up. I have been working 50 hours a week.

  23. Daniel Mangin says:

    hi

    Im Daniel Mangin i work with a 8 year old boy in Wellington New Zealand.
    Would love to get informaton from all out there with AMC how to increase interdependence, in terms of clothing, toileting etc. Also activities with sports.

    please email with ideas or add on face book. d.mango_83@hotmail.com

  24. Michelle Lichte says:

    Hi Jessica,

    I, too, have AMC. I am a 44 year old mother of an AMCer. He is 15. Yes, it is rare to be genetic, but I figured why not pass on this wonderful life. lol We are bot affected in all four limbs. Both mobile, but I can see myself getting less and less mobile.

    It was great to see you notifying others of AMC awareness day!!

    I’ve not dug deeply into your site, yet, but wanted to be sure you were aware that amcsupport.org is out there for connecting to others with AMC and that we have our annual conference coming up this July in Minneapolis.

    May God bless you and yours as you continue on your journey.

    Michelle

  25. Donna says:

    Hi my name is Donna i am 26, been in a relationship for 11 years and married for 3 years, i have 2 amazing kids boys 4 and 2. I have arthrygryposis and ive never really been told much about it so sent off for my medical notes and researched for myself. I must admit i let my disability get to me a lot, i have it in my legs and starting to notice a lot of weakness in my arms, i also have spinal muscular atrophy, i wear splints/afo’s on my legs. I never walk up stairs if anyone is behind me i don’t like them watching me walking like i so and struggling with stairs i get paranoid. I let it get me down and depressed because i want to do stuff but end up in pain. I had no idea there was so many other people with this disability and would be nice to talk to people about it that understand a lot more of what i go through. Jessica i respect you so much, your such an inspiration and amazing person. I’m starting up a group for people with this disability and if anyone’s interested in being apart of it message me donna_13101987@hotmail.com

  26. Louise says:

    I’m a 34 year old female with arthrogryposis, I’m a only child and my parents are very over protective of me, they dont even let me have a boyfriend which is vvvvvvvvvv depressing for me, all I want is to have a normal life like everyone else, please can anyone help me

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