My Angel

I am an mother of four children.  My second child a girl named Angel.  She is 10 years old and has been diagnosed with EDS.  It was very apparent at birth that there was something different about her.  The doctors finally said 5 years ago that she had EDS.  She has EDS type III.  She is always feeling that she is the only child that has this.  But we have never met any other children with it.  The doctors said that she probably would not walk, but she did.  She runs, and rides a bike.  The pain that she lives with everyday, that I will never feel that myself.  That makes her my Angel on earth.  She lives everyday to the fullest.  I'm so proud of her.

momofangel momofangel
11 Responses Mar 18, 2009

I have EDS Type III too, and I'm so glad that your daughter was able to disprove the doctors' theories. I wish this disease didn't exist, that the pain wasn't needed, but you are so lucky to have a daughter that's willing to fight through the pain. Just remember that it's a hard road ahead, and that she's not always trying to make an excuse or get out of something when she says she can't do something. Pain, fatigue, brain fog, dislocations, etc. are a HUGE part of this disease. I'm praying for the both of you.

Can I scream? Can I scream that I'm proud of her and you? I hope I'm not hurting anyones ears...<br />
I'M SOOOOOOOOOOOO PROUD!!!!!!!!!!!!!!!!!!!!!!!!!!!! BESTEST LUCK TO YOU ALL!!<br />
i'll pray for you too ok?(long list of peopel to pray for)

I am 30 and began having symptoms of being "double jointed" at the age of 2. My mother was never one to really think anything was wrong, so she just went with it. As I got older, things got worse. I had 2 ankle reconstructions(bilateral) when I was 18, and bilateral again when I was 27. The eds has caused unspecified colitis, and for years went undiagnosed. It ate away at my gallbladder, my appendix, my nerves in my wrists, and from being in and out of the hospital so often, I had my veins ruined. I had a left sided mediport inserted in 09. It ate away at the surrounding tissues of the port, and I had to have that removed and one inserted on the right side, which to say the least, is my lifeline!!! I had various pain management doctors and regular physicians call me a drug addict, I was refused from hospitals, for almost 8 years it was hell to wake up and not know. I just found out I have EDS type 3 and sarcoidosis which is mainly affecting my joints. I will need hip and knee replacements around the time I am 35-40. It is an excruciating disease and I would not wish it upon anyone in the world. I have rapidly dropped over 130 lbs in a year and a half with no reason. Its terrible to have physicians(even my own brother) tell me things that its all in my head, or that I am fine. Listen to your body, pain is the way it is telling you something isnt normal. When you are doubted, move on. When a physician is a moron and tells you that there isnt anything wrong, leave them. You need a good support system and set of physicians!!!!!! Now that I have a diagnosis, I can move on to new and better treatments!!!!!!!<br />
Good luck to all of you!!!! God bless!!!

Im 21 and have EDS III. I struggled with my early childhood when my mom would tell me things about my disorder and I didt understand why I couldnt do things a "normal" person could. The best thing that my mom ever told me was that I could do anything I wanted and that not matter what as longa s i knew my limitations and knew how to be an advocate for myself I would be ok. Today I have a son that is a year old and even with moms sound advice I find myself struggling to learn how to explain this to my son when he will understand. Just know that even with the hard times comes joy and that it might hurt but it will be ok. The doctors will look at you like you have lost your mind but KEEP GOING !! they dont know you or your body like you do. Trust your insticnts! if something doesnt feel right then most of the time its not right! but dont limit your self because of it! God bless you!!

I am 37 yrs old and have a 14 yr old daughter. We both have type 3. I have spent all my life having to advocate for myself and my daughter. I have had doctors pat me on the head and tell me my pain was "all in my head" I have also gone to a doctor for pain meds and when i picked up the presc<x>ription the pharmacist told me me it was nothing but a sugar pill...i took the bottle walked back to the doctor and threw them in his face. Everyone is right. BELIEVE everything your child tells you when it comes to pain and if it takes doctor after doctor after doctor to find someone who will listen its worth it God Bless you !

I am58 and have EDS3 in a power chair I say let her do as much as she can do as long as she can do it, do anything to help with the pain,sublocations and dislocations,and give her as much support as you can and always beleave what she says re: pain

I am 27 years old and was diagnosed in 2010 with EDS III. I am also Active Duty Military you can still live a very normal life. I have three kids and live a normal life as much as possible, yes there is bad days and there are good days. I had days were I can not even pick up my one year old, but I do not let that get to me. You have to keep positive and Live through it. I am on two diffrent meds that just coat the pain and I live with the rest. We can do this, we just can not give up. Stay active. I do Yoga and I am in PT as well which helps alot.

Hello hun. my name is Catalina and i have EDS. i found out august 4th. i want you to let her know that she is not alone. she will have a hard road though. it will get worse the older she gets. i use to be very active but my pain got so bad that i couldnt handle my sports anymore. although shes lucky to have found out at a younger age because she cant get helps and adapt a lot better. this isnt the end for her its just a new beginning. good luck to you both and God bless.

i have EDS type 3 and i am 14 years old i was diagnosed when i was 10 years old. in my town alone there are 3 KIDS living with this! Were not alone.

you are not alone,our daughter was diagnosed with eds type 3 4 years ago aged 8,we have watched a slow dettiriation in general fitness,she is now using a wheelchair on a regular basis.she also has scoliosis of the thoratic region,i advise you to keep a close eye on angels spine in case it starts to curve.if anybody say to you that eds is not painfull then they dont know what they are talking about, our daughter is on regular pain relief and the next available form of relief is morphine which we are trying to avoid at the moment.all the best of luck for the future.please contact us if you need to talk,remember you are not alone.all the best the shand family

Fair warning she'll have a hard road ahead. I have EDS IV and my best advice is any doctor she needs to see ask them first if they know the condition. If they don't leave the office and find another doctor. I ended up without use of any of my limbs because I trusted a Hack who didn't know the condition, but at the time I didn't know any better. Avoid surgeries if possible, but don't let her get to the point of breaking bones from lack of cartledge since it can lead to soft tissue damage that most times can't be fixed. Lastly explain to her as best you can not to show off her hypermobility because later in life it will cause more poblems than it's worth. I wish you the best of luck, and always let her know how much she means to you even if it means the other children feel slighted. The only reason I'm alive today is because my parents sent away my brother to a gifted school so they could devote their time and love to helping me through everything this condition brings. Life will be hard for her, just make sure she knows she always has someone to come to for a long hug. I'm 26 and live on my own now, but I still come home for those when it gets to be too much. I wish you and her the best of luck in the future, and if stem cell research ever is legalized then there's real hope for a cure I believe, so don't give up hope. If there are joint problems I can reccomend a couple incredible surgeons in Louisiana who gave me back my mobility, and my life, just post a message and I'll respond.<br />
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I hope this helps some.