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Welcome to Inspire!
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How my disease has changed my life
Share your story with other community members.
cerebral vasculitis
- By Margaret_Clark · New reply September 12, 2009
- 45 replies
- I live in the UK and was diagnosed with cerebral vasculitis 10 years ago after suffering from violent headaches, mini strokes and intense pain in my toes and fingers . I had a lumbar puncture and MRI ...
3MCC ---- A Joke??
- By mikki080 · New reply September 10, 2009
- 4 replies
- I'm Gavin's Mom --- Gavin is a one year old who was diagnosed with 3MCC at the newborn screening. I'm just wondering if anyone knows why this disorder wasn't tested for 10 years ago .... and why.... if ...
I Don't Get It ! ! !
- By SickOfBeingSick · Posted September 10, 2009
- 0 replies
- I don't get it. Before I stopped working, I needed to take one 10 to 15 minute break each day to lie down, close my eyes, and rest. When I was in college, before I became so ill, I tried to take a 10 ...
Looking for Information on Melo Disease
- By shurrun · New reply September 9, 2009
- 2 replies
- I'm a 46 year old female that have melorheostosis. It is a rare bone disease. No treatment no cure. It is very painful. Looking for someone els that has this disease that is willing to share information ...
Brugada Syndrome
- By junimead · New reply September 7, 2009
- 1 reply
- I still haven't found many people to talk to about this disease. I was diagnosed with it in November of last year and would love to have a few more people that understand my fears. I had an AICD placed ...
Serpiginous Choroiditis
- By FaithLoveHope121 · New reply September 6, 2009
- 24 replies
- I have been dealing with this eye disease for about 13 years now. These last 2-3 years have proved to be the worst of them all. Not so much the disease itself but the treatments of Immuno Suppresssants ...
Inherited Spherocytosis and Hunger
- By mardia · New reply August 28, 2009
- 2 replies
- Has anyone heard of research suggesting a connection between inherited spherocytosis and constant hunger ...
Devics nmo
- By shugtucs · New reply August 28, 2009
- 1 reply
- My name is Shannon. I have a disease called Devics. It is an autoimune disease. It started with the lose of sight in my right eye. I was not treated fast enough so it caused perm damage. It is a disease ...
Different than Most
- By Jannie · Posted August 23, 2009
- 0 replies
- I have complex regional pain syndrome nearly six yearsnow. I promote awareness to all in my city and state. I me my self had to stop looking a this pain and all the rest of the stuff that goes with it ...
Mastocytosis and Joint Pain
- By Melp · New reply August 22, 2009
- 12 replies
- Knowing that Mastocytosis is found in connective tissue - does that explain why I woke up the other day with pain in every joint? I feel like an old woman! I'm still in pain and now wondering if it will ...
My Indolent Masto
- By Cocoapuff68 · Posted August 19, 2009
- 0 replies
- Wow how this disease has changed my life..so much so, I no longer recongnize the wife, mother and friend I once was. I can longer have the dinner ready, kids clothes set for school, groom the dog didn't ...
Stressed is a funny Word
- By Jannie · Posted August 16, 2009
- 0 replies
- Stressed is a funny word you see when turned around it spells dessert....stress can up more health problem than a person needs....heart rate jumps blood pressure raises nuts and bolts starts jamming up ...
Loveology - a poem to inspire
- By Poetessa · New reply August 12, 2009
- 13 replies
- Since my diagnosis I have viewed life differently. I truly value the good moments more and more though the bad moments are still so very hard to bare sometimes. I have the worst time with the pain that ...
Systemic Mastocytosis
- By doglvr123 · New reply August 7, 2009
- 40 replies
- My husband has just been diagnosed with this and I know absolutely nothing about it. Can someone give me some insight? Thanks, Sonya ...
September Pain Awareness Month
- By Jannie · Posted August 7, 2009
- 0 replies
- Hi all, It's been a while since I last posted. September has been proclaimed as Pain Awareness Month across the U.S. many different things will be going on in many cities to promote awareness. Here is ...
Chronic Myelomonocytic Leukemia
- By besg · New reply August 5, 2009
- 2 replies
- I have had Systemic Mastocytosis for approx 5 years. My Tryptase levels jumped to over 400 and so I had a second bone marrow biospy done just this last June. Unfortunately it showed that I have now advanced ...
mastocytosis
- By methiffany · New reply August 5, 2009
- 16 replies
- My name is JulieAnn and I was Dx w/ mastocytosis about two years ago. Recently I have been experiencing major lower leg pain. It is only from the knees down and is a burning all consuming pain. Nothing ...
anybody out there that has Frederick's Ataxia?
- By mike23 · New reply August 4, 2009
- 4 replies
- i'd like to meet someone who goes through this disease like i do, that way we can build a friendship knowing we arent alone ...
PML
- By com4tsweets · New reply July 23, 2009
- 9 replies
- I posted awhile back but would like to open this for discussion. Oct. 29, 2008 Is it me or wouldn't you think that a Medical Director of a Center for Infectious Diseases that specializes in Hiv related ...
Angry as Hell !!!!!!
- By SickOfBeingSick · New reply July 7, 2009
- 23 replies
- I haven't been able to get appropriate medical care for almost 30 years and not for lack of concerted effort. I have multiple organ damage, brain damage, bone damage and CNS damage, most of which was ...
