I am very eager to meet and chatt with anyone who either has Osteopetrosis, knows someone who has it, wants to learn more, or just wants to comment on my blog! Please feel free to ask me anything.
You can comment on here, although if I comment back it has no way of notifying you that I did, so you have to check back, or...Please email me at: Lynsies_story@yahoo.com
Lynsie you are an awesome and very inspirational person.
ReplyDeleteI pray that you can raise the awareness of this disease and one day find a cure!!!
But those who trust in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
Isaiah 40:31
Tricia: words cannot express how much your comment touched me. I thank you for your encouraging words and your prayers. And you could not have posted a better verse. I love that verse with all my heart. Thank you so very much.
ReplyDeleteYou are my Angel niece, an I'm so sorry you have to go through this. Randy and I are their when you need us any time. Grandmom's wing are wrapped around you safe. Love you with all my heart. May ever day be better then the day before. Love Aunt Kay and Uncle Randy
ReplyDeleteHello Lynsie,
ReplyDeleteI saw you post a link on Facebook and out of curiosity clicked my way over here. Your blog posts inspired me to do some research and well, your disease was very interesting to me. I love that you have found the courage to share your story openly as you have. I've subscribed to your updates and look forward to reading what you have today. Thank you for this.
Aunty Kay:
ReplyDeleteI love you so much, thak you for all your love and support, I miss you.
Andy Hamilton:
Im so excited that my blog has sparked a real interest in Osteopetrosis for you. and Im so glad you've subscribed to my posts! I also welcome any questions, comments or even advice that you may have. =)
Greetings Lynsie,
ReplyDeletePeace and love all the way from the UK! I also have Osteopetrosis, but it wasn't diagnosed until Summer 2008 when I was 27 years old.
I really do wish you well for the future, and thank you for making this blog so non-medical people can learn more about the disorder.
Razzie :)
Razzie:
ReplyDeleteWords cannot desribe how happy I am to meet someone else with Osteopetrosis, I mean I am sorry you have it, but I dont feel alone anymore! =) I would love to know more. You must have the Adult onset one. Have you broken many bones? has it cause any complications?
Thank you so much for commenting, I look forward to hearing from you,
Lynsie
you can either contact me on here, or email me at Lynsies_story@yahoo.com
Greetings Lynsie, Razzie here again!
ReplyDeleteYou're also the first person I've ever met, either online or in real life, who also has Osteopetrosis! :D
It's caused the most damage to my legs, teeth and head but the strange thing is I dislocate more than I break. I've lost most of my teeth and my eyesight is slowly going, but I'm happy that I know what's wrong.
A thousand THANK YOUs for replying to my comment, I hope this Forum gets plenty more Osteopetrosas commenting!
Razzie :)
Razzie:
ReplyDeleteWow, so I dont think you have the adult onset, your symptoms are far too severe. Im so sorry to hear thats its affecting you so. Is it alright if I ask how exactly it is affecting your teeth and head?
My head is being affected by the osteopetrosis, but I have always wondered how it affects teeth.
To be honest I don't know which form I have, I was offered genetic counselling but I turned it down. And no, I don't mind telling you about what's it done because the more people know about how the disease works, the better :)
ReplyDeleteI have a large head (macrocephaly) that measures 62cm around at the widest part, about an inch above my eyebrows. It's lightbulb shaped, but getting the right style of haircut disguises it!
The dentine (living part) of my teeth isn't alive so my teeth just die, fall apart and get massively infected. In April 2001 I had fifteen taken out, and I've had 3 more out since. The teeth I still have are loose and sensitive, two of them are already decaying so when the time comes I'll ask for them ALL to be taken out... it sounds extreme but I'm TERRIFIED of dentists and there's no point delaying the inevitable!
I had bilateral femoral dysplasia (dislocated hips) when I was born, and had it corrected several times. My left hip wouldn't stay in place so it was broken and reset with screws and a plate. When I sit or lie down I look like I have cerebral palsy in my legs but I don't, it's just the way they flop around and look "off balance".
Can I ask what your Osteopetrotic symptoms are? You don't have to tell me if you don't want to, I'm jut so curious now I've finally met someone else with it :D
Well you've sure have had your fair share of health issues and my heart really does go out to you.
ReplyDeleteOsteopetrosis has mainly caused me to break bones super easy, ever since I was diagnosed with it at age 12 I have broken 8 bones, and I am 23 now. I have broken my left femur (the biggest bone in the body) 3 different times all the way through, and had a metal bracket put in the first time, then the second time they took the bracket out, and then the third time I broke it they put a metal rod in my leg to prevent it from breaking again. I have broken both humerus bones (the larger arm bone), and then other bones like ribs and things.
I have a fairly small stature because of it, Im only 5 feet tall.
and my sinus cavities are closing in causing me to get sinus headaches and mirgraines almost every day, so I take a very strong pain medication for it. but I am in the process of scheduling a surgery to have them burned open at Standford, which Im hoping takes care of most of my headaches. Because Osteopetrosis it self causes migraines.
Do you get headaches because of it? And you were diagnosed with it at age 27, how old are you now?
P.S.
ReplyDeleteRazzie do you have a facebook? if you do please add me as a friend on my Lynsie's Story profile =) just recently I have been comming in contact with others who have osteopetrosis its amazing! heres the link to my profile: http://www.facebook.com/profile.php?id=100001379882098&v=wall#!/profile.php?id=100001379882098
Nowaitaminute - headaches? Yes I do, always above the left eye and they can make me feel really sick and "heavy" in my eyes. Can Osteopetrosis cause headaches too?
ReplyDeleteI did have a Facebook for a while, but it filled up with so much abuse / adult content / spam that I deleted it. You're more than welcome on my deviantART site and I've just joined YouTube!
http://razziembessai.deviantart.com
http://www.youtube.com/user/RazzieMbessai
I'm 29 and just over 5 feet tall with short limbs and a big head so I look much younger. I've broken a few fingers and my left wrist, but it took a month before it was put in plaster... and I didn't know I had Ostepetrosis back then, so of course it's overhealed (as bones do) and the extra bone has stayed there and pushed it out of shape :'(
Thank you again for all your kind words and for being so honest about your Osteopetrosis. It's fantatic that you've found other Ostepetrotes online, and I'm hoping to create YouTube videos about it. Unfotunately it has the same problem autism does - there's loads of information for children and their parents, but not a lot of news for / from adults with it.
Razzie:
ReplyDeleteYeah Im not sure how exactly, I should research it, but Osteopetrosis alone causes headaches =( and unfortunatley I have suffered from horrible migraines ever since I was diagnosed with it... Migraines so painful that they make me throw up.
Ya your headaches and pain and heaviness in your eye are probably from Osteopetrosis =(
Oh and thanks for the links!
And yay!! another shorty! I dont have small limbs, my doctor said that I actually have long legs for my size lol but thats cool that were both around 5 feet lol.
And if you ever do get a facebook again, please let me know ;) Im so happy to have met you.
Hi!
ReplyDeletewow Lynsie, i'm another shorty...five feet too, but like you, with long legs!
today i went to the hospital, to talk about radiotherapy. now the situation changed a little: everybody at the hospital agrees that i have osteopetrosis, but which type?
here is the biggest doubt! my doctor sent my clinical process to London and we'll see. Today she told me that i can't do radiotherapy while we don't know the complete diagnostic.
then maybe a bone marrow transplant will be needed, because my bone marrow cavity is getting smaller and it can fails...but only if i have your type of osteopetrosis.
=S
Vanessa:
ReplyDeleteVanessa from facebook! Hi friend! wow so they dont know hat type of OSteopetrosis you have? Well, that would be the deciding factor on what type of treatment you should get.
What do you mean if you have my tpe of osteopetrosis? Did your doctor say that in The Intermediate type of Osteopetrosis the bone marrow canal closes up? (Cause mine is much smaller in diameter, but dont know if its closing) and that my type should get radiotherapy?
Greetings Vanessa,
ReplyDeleteGood luck with your radiotherapy if you have it, and I hope your bone marrow transplant goes well :)
I have low iron, magnesium, potassium and zinc in my blood but as far as I know my bone marrow is OK. I know it's not perfect, but I've never needed transplants or radio/chemo therapy.
Apologies for late reply, I've been ill for a week with an evil cold! :D
hello,my name is paulo,i have 33 years old,and i have a soon with 2,5 months with ostepetrosis.i´m very afraid for the future,and dont know what will appens in future to my soon.can you tell anything about this disease?in portugal nobody knows about this disease.i wish you good luck to the future and sory about my english(is bad).
ReplyDeletepaulobandit@gmail.com
I have osteopetriosis. Gene test showed defect in my clcln7 gene. Is this site still active? I have lots of info to share. Had petrosis for 32 years. Email me stefanief13@aol.com.
ReplyDeleteStefanie! It is still active I've just been away from my blog for a while! I would LOVE to hear all of the info that you have to share!!
Deletemy other email is lynsieloverly@hotmail.com
I'm a 14 girl with the 2nd type of osteopetrosis, reading your story really touched me, with my disease I experience alot of pain, unfortunately all of my siblings have gotten this disease also, we found out it came from my father and my great grandfather, right now I'm in bed because my spinal disc dissolved and then calcified so I have to get surgery tomorrow and I'm really scared.. I'm hoping it goes well.. Thank you for sharing your story
ReplyDelete