NORD Rare Disease Support Community

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hereditary spherocytosis...pain long after splenectomy??

By pianoraindream · Posted 2:09 am
Discussion in Finding emotional support · 0 replies
Hello, My name is Jessica. I was diagnosed with spherocytosis when I was 17 years old. I was in and out of the hospital twice before my surgery (my spleen and galbladder removal)... It has been 7 years ...

PLEASE HELP

By holt73099 · New reply 1:48 am
Journal · 1 reply
I have a 18 month old little boy - he has multipile health problems there are - low and high blood sugar, low thyroid, low blood pressure, 58 degree scoliosis, metabolic conditaion, kidney problems, reflux ...

frustrated

By beachrn · Posted 12:22 am
Journal · 0 replies
Hi all, not really sure why I'm writing other than you all seem to be dealing with the same thing I am, so maybe you'll understand. I was recently diagnosed with Prinzmetal Angina. I've been dealing with ...

my 2 year old

By lilmomma0709 · New reply yesterday at 11:11 pm
Discussion in Getting a diagnosis · 2 replies
my son was born in november 2007 he was normal as can be come febuary of 08 i took him to the hospital doctors said it was just a cold then he keep getting worse about 3 days later he stoped breathing ...

ollier's disease

By ILOVEMYGRANDKIDS · New reply yesterday at 11:06 pm
Discussion in How my disease has changed my life · 32 replies
my dauthder has olliers disease,when she was born she was fine she looked fine she was a beautiful baby, she was born in 1977 . when it was time for her to star walking, she would sit down on the floor ...

new here, anyone have piebaldism?

By foreverbj · New reply yesterday at 10:28 pm
Discussion in Getting a diagnosis · 78 replies
hi, i am new here, but recently did some deep research about the skin condition i have. although we have been told our entire lives (me and my sister) that we had vertilego, or waardenburg syndrome, I ...

Desiree has passed

By DesisMom · New reply yesterday at 10:27 pm
Journal · 61 replies
Well my beautiful butterfly passed away December 21, 2009. It has only been 10 days and it feels like years. She fought hard until the end. They think that she caught a viral infection and because of ...

Chondrocalcinosis CPPD

By 1irishman · New reply yesterday at 9:36 pm
Discussion in My disease has no treatment · 25 replies
Does anyone have this disease? Looking to find anyone interested in having a support group. How do you deal with the constant pain? Need someone to talk to who knows what it is like ...

Why I am here

By acushnetrog · New reply yesterday at 9:15 pm
Journal · 8 replies
For 8yrs now I have been dealing with something I can barely describe but the term brain fog seems close. I learned to accept and manage it over the years except for the past 5 days when it's become overwhelming ...

My hubbie

By sheloves2laff · New reply yesterday at 9:11 pm
Journal · 8 replies
My husband as been sick for about 6 years and like most of you I am sure- was misdiagnosed with everything under the sun. He was finally diagnosed with an EMG- His GAD test was normal. In the last 18 ...

tc? appt sched w/ Dr. Long

By tdcarson · New reply yesterday at 8:38 pm
Discussion in Getting a diagnosis · 1 reply
I sent off my MRI to Dr F and Dr Long. Dr Long's office called today to sched a phone appt at the end of month. It's only been maybe 2 week since I sent it. I'm nervous but so excited to maybe finally ...

REFLEX NEUROVASCULAR DYSTROPHY

By GRAM04 · New reply yesterday at 8:25 pm
Discussion in Finding emotional support · 17 replies
Looking for info ...

henoch schonlein purpura

By shauny23 · Posted yesterday at 8:13 pm
Discussion in Getting a diagnosis · 0 replies
So i wake up one morning to find that my legs are covered in red blotches, im thinking meningitis?measles? so i go to my gp who does not know what it is but puts me through a course of tests, this charade ...

Panhypopituitarism

By jackfwms · New reply yesterday at 7:30 pm
Journal · 52 replies
I've had this condition since 1988. The result of a brain injury. It feels as if my brain is slowly dying. I have no idea what to expect next. In Feb. 2009 I was diagnosed with type 2 diabetes. I'm taking ...

I met My Father today~~~~

By MelissaShuford · New reply yesterday at 5:58 pm
Journal · 9 replies
WOW !!!! What am I feeling.....God please embrace me and hold me close...tenderly remind me of your unconditional love that has carried me thru almost 47 years now....even when I didn't know it you were ...

Lets Complicate Things a Little More~~~~~~

By MelissaShuford · New reply yesterday at 5:49 pm
Journal · 2 replies
Yesterday i received a letter from the review of my sleuth heart recorder (implanted loop recorder)Stating that after review on 2/25/2010 they had attempted to contact me for several days to discuss findings ...

Em.....Nerves ...... and the Gettysburg Address

By MelissaShuford · New reply yesterday at 5:41 pm
Journal · 3 replies
My precious Em, Bless her heart and may I request a prayer for her as we I post~~~~She has studied the Gettysburg address inside and out and knows it well and today is THE DAY to recite it in class ~as ...

PLEASE HELP MY SON

By holt73099 · Posted yesterday at 5:32 pm
Discussion in Finding a doctor · 0 replies
I have a 18 month old little boy - he has multipile health problems there are - low and high blood sugar, low thyroid, low blood pressure, 58 degree scoliosis, metabolic conditaion, kidney problems, reflux ...

pots/dysautonomia

By Nina372 · New reply yesterday at 4:53 pm
Journal · 18 replies
Does anyone here have experience or knowledge about getting a pace maker for their postural orthostatic tachycardia syndrome (pots ...

My sister said, "The Lord helps those who help themselves...

By KDenni · New reply yesterday at 4:31 pm
Journal · 4 replies
That's what she said at Christmas. She doesn't own a Bible. Is that a quote from the Bible? I own and read the Bible. I've heard it before, but I don't recall reading it. But if that's is why she hasn't ...

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The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration. The NORD Rare Disease Support Community is sponsored by the National Organization for Rare Disorders in partnership with Inspire.