OT Please someone help if you can

Discussion in 'Fibromyalgia Main Forum' started by blueski31717, Aug 18, 2006.

  1. blueski31717

    blueski31717 New Member

    What I need is how to go about starting a message board?

    Let me explain, as some of you know my daughter has a rare

    bone disease. She is 16 years old right now but when she

    was 9 years old she would scream at night in a deep sleep holding

    her hip. I went to several doctors and all they said

    was "growing pains". She suffered on and off with pains in

    her hips/legs until she reached 13. She developed swelling

    over her shin which was very painful. The doc had x-rays

    ordered and noted a large lesion in her left lower leg

    bone. We went for months thinking she had cancer. I cried

    in the shower so she couldn't see me break down in front of

    her. They finally dx her with a very rare bone disease

    called Polyostotic fibrous dysplasia. I have been all over

    the web trying to find a message board for support and it

    just isn't there She has many lesions in both hips, length

    of both legs and in her feet. Thank god it wasn't cancer

    and also not in her facial bones which is cherubism. This

    disease replaces the healthy bone tissue with fibrous like

    tissue ballooning the bone out hence the extreem pain. She

    cannot run,jump, play sports or do most normal activities

    most kids do. She could step off a curb and shatter her

    bone in her leg.I am telling you this because my daughter

    has no one but myself to talk to and when she gets older

    like me I am sure she would like to have others understand

    that day she cannot do much that day because she is in so

    much pain.To look at her she looks like a normal girl with

    all of the hopes and dreams of becoming a mother one day-

    but that is something we will have to cross because of the

    disease in her hips she may not be able to carry a child.

    SO I would like to start a message board but have no clue

    on how to do it. Thank you for listening .

    [This Message was Edited on 08/19/2006]
  2. rosemarie

    rosemarie Member

    I am sorry that your daughter has to go thru this and to have such a painfull disease. How does she handle it? Does she have friends that she can talk with?

    She does have a great support system in you. YOU are always there for her and always will be. I Hope that some day soon there will be others like her that can talk with her like we do.

    My heart goes out to you and her. Take care and love her all the time,

  3. ilovecats94

    ilovecats94 New Member

    MSN Groups. Just Google that and it is free and easy to start a board up for your daughter.

    There are other boards, but this one has a chat room, place for photos, etc.

    Good luck!

  4. blueski31717

    blueski31717 New Member

    She has a few friends but like us her friends can't begin to understand what she goes through and can't understand why she cannot do what they do. She does have a bf right now who is very understanding and she talks to him alot. Thank you for the suggestion about MSN I will check it out.
  5. rockgor

    rockgor Well-Known Member

    Sorry to hear about your daughter's illness. I think the hardest thing about being parent is seeing our children suffer.

    If necessary, you coupld probably hire some computer savy young person from a computer store who could assist you for a modest fee.

    I think it's an excellent plan to help your daughter.
  6. angellwolffe

    angellwolffe New Member

    you can go to yahoogroups and go to where it says start a group and it should tell you how to start one.

  7. 1sweetie

    1sweetie New Member

    I can not help you with your question but I do want to tell you that my heart goes out to your daughter and your family.

    I would give my life for my childred without question if that was possible. We just want to fix their problems and for them to have a perfect life and it hurts so bad when we can't.

    I am so sorry that she is so sick but it sounds like she has a great friend and Mother in you.

    Best of luck with her Message Board. It's a great idea.
  8. Cromwell

    Cromwell New Member

    I am hopeless on computers but I think you could go to a company that creates websites for you. Some of them are very reasonable and I am certain that if you explained your plight you may even get some charitable help.

    I am really sorry your daughter has this and you both are so brave coping this way.

    God bless and I do hope someone can help you.

    Love Anne Cromwell
  9. Fredericka

    Fredericka New Member

    My goodness, that sounds just frightening. How awful for you and your family all these years. My heart really goes out to you.

    I know a great place to make message boards, a lot easier to navigate than MSN or Yahoo. But we're not allowed to put site names on here...are we?

    I have a board, and it did take a long time to figure out all the bells and whistles.Have had a board for years & years. It's great. I love it.

    I know you don't know me, but I'm just an old lady with FMS/CFS, for decades, and lurk a lot more than I post.

    I would be very glad to help you in any way I can, even setting it up for you.

    It's something I enjoy doing.

    Maybe we could arrange a time to meet in chat and exchange e-mail addys or something?

    I'll check back later for a reply!!
    [This Message was Edited on 08/19/2006]
  10. kjfms

    kjfms Member

    I am so sorry that you daughter has to suffer with this disease. I did some quick research and found a few sites for you and your daughter.

    To start a message board for teens who have this disease just go to Google groups it appears to be pretty simple.

    Polyostotic fibrous dysplasia aka/or McCune-Albright syndrome

    Here are some site for you to check out: (I can not give the URLs per the rules of this board on URLs to other message boards).

    Fibrous Dysplasia Support Online

    www fdsol dot org

    Dr Greene's site has a special area for teens to go to for information as well online chat and all kinds of things-your daughter may want to check it out.

    www dot drgreene dot org

    Best of luck to you both,

    Karen :)

    [This Message was Edited on 08/19/2006]
  11. cjcookie

    cjcookie New Member

    of mine has a son with something that sounds similar. The "Make a Wish Foundation" gave the family a trip to Disney World. It might be worth looking into for your daughter. She doesn't have to do Disney - I think they grant most any reasonable wish. Good luck.
  12. puffy1

    puffy1 New Member

    this a online support group I just found that she might be interested in if you haven't seen it yet. It might be of some help to her and you sounds like an awul illness I hope she feels better soon.

  13. blueski31717

    blueski31717 New Member

    thank you for all of your replies I will check them all out. Crystal (daughter) is my rock and support. Believe me she helps me more than I could ever repay.
  14. PVLady

    PVLady New Member

    Is this condition also called Albright Syndrome? I found the info below:

    The Albright syndrome (fibrous dysplasia) is a clinical entity characterized by osteitis fibrosa disseminata, areas of pigmentation and endocrine dysfunction which in females is associated with precocious puberty.[1] Association of multiple endocrinopathies with Albright syndrome is a rare occurrence, so we thought it worthwhile to report such a case having features of acromegaly and hyperthyroidism.

    Albright and his associates,[1] described a syndrome characterized by osteitis fibrosa disseminata, areas of pigmentation and endocrine dysfunction, with precocious puberty in females.

    The skeletal lesions affecting one, a few, many or almost every bone in the body are the essential features of this entity and may or may not be accompanied by either or both of the other two features.[9]
    The disease does not appear to be hereditory and the frequency is approximately the same in both sexes.[9]
    Bony lesions may be mono-ostotic or poly-ostotic or its variant. Mono-ostotic form is the most common and majority of the lesions are located in the craniofacial bones or ribs.

    Mono-ostotic fibrous dysplasia is most often diagnosed at the age of 20-30 years. The roentgenographic appearance of the lesion is that of a radio-lucent area with a well delineated, smooth or scalloped border, typically associated with focal thinning of the cortex of the bone. Involvement of the facial bone may create a leonine appearance (Leontiasis ossea).[8]

    The alternating areas of translucency and increased opacity has been stressed by Albright et al[1] as distinctive of fibrous dysplasia. A flat bone may increase 6 to 8 folds or more in thickness. The occipital and frontal bulges and the grossly thickened, dense, hyperostotic base are all characteristic.[13] Serum calcium and phosphorus are usually normal.

    Serum alkaline phosphatase level is raised in half of the cases of poly-ostotic fibrous dysplasia.[9]
    The most frequent extraskeletal manifestation is the skin lesion. The abnormal cutaneous pigmentation consists of isolated dark brown to light brown macules which tend to remain on one side of the midline, the border is usually, although not always, irregular or ragged (coast of Maine) in contrast to the smooth borders of the pigmented macule of neurofibromatosis (coast of California).

    As a rule, there are fewer than six of the total lesions, which range in size from one cm to those covering very large areas, particularly the back buttocks or sacral regions.[9]
    The sexual precocity of unknown cause is found in females and rarely in males.[1],[2] Another endocrine abnormality present with increased frequency is hyperthyroidism. This is always associated with low or undetectable TSH levels and most patients have multinodular goiters rather than the typical findings of Grave's disease.

    [7] Rare association includes the Cushing's syndrome,[3] hyperparathyroidism[2],[4],[5] acromegaly,[8],[10],[11],[12],[15] possibly hypogonadotrophic hypogonadism[8] and soft tissue myxomas.[9]
    Association of multiple endocrinopathies is a rare occurrence, although gigantism and hyperthyroidism in one case of Albright syndrome was recorded by Firat and Stutzman.

    [5] The etiology of the endocrinopathy is not known but the following opinions prevail: (i)that the endocrinopathies are the result of the hypothalamic hypersecretion of releasing hormones,[6],[10] and (ii) that the involved endocrine organs are unduly sensitive to trophic hormones[14] or act in an autonomous fashion.[3]
    The diagnosis of acromegaly must be made with caution when poly-ostotic fibrous dysplasia is present. Involvement of the facial bones and mandible with fibrous dysplasia can produce gross distortion of the facial features which may be suggestive of acromegaly

    13] The effect of excess growth hormone upon other organ systems besides bone must serve for a diagnostic criterion of acromegaly in the presence of Albright syndrome.
    Symptomatic fibrous dysplasia can be managed by a variety of orthopaedic operative procedures such as osteotomy, curettage and bone grafting. Calcitonin may be effective in treatment of wide spread disease associated with bone pain and high serum alkaline phosphatase levels.[9]

    Albright, F., Butler, A. M., Hampton, A. O. and Smith, P.: Syndrome characterized by osteitis fibrosa disseminata, areas of pigmentation and endocrine dysfunction, with precocious puberty in females: Report of live cases. New Engl. J. Med., 216: 727-746, 1937.
    2. Benedict, P. H.: Endocrine features in Albright's syndrome (fibrous dysplasia of bone), Metabolism, 11: 30-45, 1962.
    3. Danon, M., Robboy, S. J., Kim, S., Scully, R. and Crawford, J. D.: Cushing's syndrome, sexual precocity and polyostotic fibrous dysplasia (Albright syndrome) in infancy. J. Pediatr., 87: 917-921, 1975.
    4. Ehrig, U. and Wilson, D. R.: Fibrous dysplasia of bone and primary hyperparathyroidism. Ann. Int. Med. 77: 234-238, 1972.
    5. Firat, D. and Stutzman, L.: Fibrous dysplasia of the bone. Review of twenty four cases. Amer. J. Med., 44: 421-429, 1968.
    6. Hall, R. and Warrick, C.: Hypersecretion of hypothalamic releasing hormones: A possible explanation of the endocrine manifestation of polyostotic fibrous displasia (Albright Syndrome). Lancet, 1: 1313-1316, 1972.
    7. Hamilton, C. R. and Maloof, F.: Unusual types of hyperthyroidism. Medicine, 52: 195-215, 1973.
    8. Joishy, S. K. and Morrow, L. B.: McCune-Albright's syndrome associated with a functioning pituitary chromophobe adenoma. J. Pediatr., 89: 73-75, 1976.
    9. Krane, S. M. and Schiller, A. L.: Hyperostosis, neoplasms and other disorders of bone and cartilage. In, "Harrison's Principles of Internal Medicine". Editor: R. G. Petersdorf, R. D. Adams, E. Braunwald, K. J. Isselbacher, J. B. Martin and J. D. Wilson, 10th edition, McGraw-Hill International Book Company, Singapore, 1983, pp. 1963-1972.
    10. Lightner, E. S., Penny, R. and Frasier S. D.: Growth hormone excess and sexual precocity in poly-ostotic fibrous dysplasia (McCune-Albright's syndrome). Evidence for abnormal hypothalamic function: J. Pediatr., 87: 922-927, 1975.
    11. Lipson, A. and Hus, T. H.: The Albright syndrome associated with acromegaly: Report of a case and review of the literature. Johns Hopkins Med. J., 149: 10-14, 1981.
    12. Powell, D. G. B.: Polyostotic fibrous dysplasia with acromegaly (Albright's syndrome). S. Afr. Med. J., 50: 182-183, 1976.
    13. Pritchard, J. E.: Fibrous dysplasia of the bones. Amer. J. Med. Sci., 222: 313-332, 1951.
    14. Scully, R. E. (Editor) and McNeely, B. U. (Asst. Editor): Case records of the Massachusetts General Hospital (Case 4-1975), New Engl. J. Med., 292: 199-203, 1975.
    15. Scurry, M. T., Bicknell, J. M., Fajans, S. S. and Arbos, A.: Polyostotic fibrous dysplasia and acromegaly. Arch. Intern Med., 114: 40-45, 1964.

  15. blueski31717

    blueski31717 New Member

    Thank you for your response. We understand the disease but what I was looking for was an outlet like this one for my daughter so she may find others with her disease. She has been tested for Albrights ,although she does have the cafe spot on the length of her leg, she tested neg. Thank you for your reply. We have had to recently go up on her medication for pain recently from Advil to lorcet plus. Pray it will help.
    [This Message was Edited on 08/22/2006]

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