Sarcoidosis needs a voice...those of us dealing with the disease feel so helpless. There is no cure, doctors are guessing, taking chances with people's lives with an illness that is not understood.
Vanderbilt, where I believe Travis works in the ER, is doing some trial studies. You h...

Sarcoidosis needs a voice...those of us dealing with the disease feel so helpless. There is no cure, doctors are guessing, taking chances with people's lives with an illness that is not understood.
Vanderbilt, where I believe Travis works in the ER, is doing some trial studies. You have the opportunity to make this illness known, to help others understand what it does to those of us living with it.
We need more people to become aware so money can be raised to find not only a cure but the cause of the disease.
Because it is seldom diagnosed how do we know how rampant it is? Many people die from a secondary cause of Sarcoidosis not knowing they even had it.
Patients are looked at as if they are hypochondriacs because the medical profession is so unfamiliar with this disease.
Living with Sarcoidosis limits our lives, and the lives of everyone around us. It is also very expensive to keep up with the medical testing and medicines necessary to get out of bed each day.
Think of how wonderful it will be for the tens of thousands of people living with this disease when they can become themselves again and have a life again.
Please help us spread the word.

Have a show to raise awareness about PWS, and how it affects not only the patients but the whole family and even the community. Inform the public that obesity is not just fat for these patients, that due to the deletion of Chromosome 15, causing the Hypothalmus gland to malfunction (controls h...

Have a show to raise awareness about PWS, and how it affects not only the patients but the whole family and even the community. Inform the public that obesity is not just fat for these patients, that due to the deletion of Chromosome 15, causing the Hypothalmus gland to malfunction (controls hunger, thurst and releases hormones that prompt the release of substances responsible for growth and sexual development. There are not enough group home's that can provide the care for these patient plus no funds to help struggling families afford a group home. The House of Representives just passed Res 55 to make an awareness month for PWS. I have a 21 year old son with PWS and we have battled this for a long time please help us raise awareness so it will help the families just facing this. PWS affects 1 in about every 12,000 in both male and female.
Thank you,
Pam Tidwell

There are thousands of conditions affecting children throughout the world that go unmentioned, therefore untreated. Since the conditions are so rare, many dr's know very little information beyond the textbook description and give very little hope to the parents of these children. Some children...

There are thousands of conditions affecting children throughout the world that go unmentioned, therefore untreated. Since the conditions are so rare, many dr's know very little information beyond the textbook description and give very little hope to the parents of these children. Some children are left to die, because there is nothing else known to do but just that.
My son, has hydranencephaly, and is one of those children. Fortunately, I found an online support group that proved my son's doctor given prognosis of "incompatible with life" to be wrong. Why is it that doctors are so quick to make such a diagnosis for many rare conditions, yet there are so many children living and defying the odds?

Yep, I'm fat.

I'm just like many Americans, but how I got this way is a whole different story than most. It all started quite a few years ago when things in my body started to go crazy. Things really started to go downhill while I was training to referee high level hockey in 2002. My ...

Yep, I'm fat.

I'm just like many Americans, but how I got this way is a whole different story than most. It all started quite a few years ago when things in my body started to go crazy. Things really started to go downhill while I was training to referee high level hockey in 2002. My brain was doing goofy things, I couldn't remember who I was giving penalties to, and I was in the best shape of my life, yet I couldn't keep up with others. The things I did to keep the weight off were more than any "normal" person would do. Then came the funky injuries that just refused to heal. A shoulder that I had surgery on, an ankle sprain that I spent 6 months trying to fix. After that was the infamous weight gain... The fatigue... The exercise intolerance... the gorgeous stretch marks... the hair loss... and the piece de resistance... the almighty buffalo hump!

I went to doctor after doctor trying to find answers, finally found one who did a 3T MRI and found my pituitary tumor. Being the athlete I am, it was then decided that I'd compete in a whole new type of triathlon... the Cushing's Triathlon- Pee in a jug, spit on a cotton swab and bleed into a tube. This resulted in my first Cushing's diagnosis.

Headed off to Houston for brain surgery. Made it through that like a champ. But the dreaded disease reared it's ugly head just a few months afterward. It was back to peeing in the orange jugs, chewing on cotton swabs, and having nightly pokes from the neighborhood vampires.

Got put on an antifungal in an effort to knock my cortisol down (goofy, I know, but it works for some...). Boy that's fun! I'm fungus free and my feet look great, but I've got a mysterious rash. Guess you win some and lose some, eh? I fight every day to stay out of adrenal insufficiency, but hey, I've got energy again!

Now it's been determined I needed a Bilateral Adrenalectomy, BLA in the "cushie" world. That's coming up in the next few months. I'll no longer make my stress hormones myself and I'm going to be arm in arm with part of a pharmacy for the rest of my life. I guess the good news is, unlike livers, adrenal glands can't regenerate so fingers crossed Cushing's should be gone forever... or is it? I guess we'll see. My main worry now is if something goes wrong, who's going to know how to fix it? Most docs don't. EMT's are in the dark. It's time to educate the masses so that I can go where I want, do what I want and not have to be afraid that I'm going to die because someone doesn't understand my condition.

I'm ready to not be the funny fat girl with stretch marks and a hump, I'm ready to be the voice that educates the world about Cushing's.

A friend of mine lost one of her twins at 360 days old. He went from sniffles to life support within 24 hours. Her other twin was hospitalized for 2-3 weeks for RSV treatment and has to have special shots in the fall/winter to help protect his already weakened immune system. Since her twins we...

A friend of mine lost one of her twins at 360 days old. He went from sniffles to life support within 24 hours. Her other twin was hospitalized for 2-3 weeks for RSV treatment and has to have special shots in the fall/winter to help protect his already weakened immune system. Since her twins were born only a little early and had generally been healthy, she was unaware of RSV and the signs to look for. She did now want her loss to be for naught, so she has started a campaign to raise RSV awareness. It is caused Awareness for Alexander.

What is Multiple Sclerosis AKA MS? Neurological and Autoimmune descriptors, how it affects the CNS

What are the causes? unknown, is it a devastated action to the immune system, aggravated by accident and/or infection

Is it heritary? I have heard it isn't. But, also mothers/daug...

What is Multiple Sclerosis AKA MS? Neurological and Autoimmune descriptors, how it affects the CNS

What are the causes? unknown, is it a devastated action to the immune system, aggravated by accident and/or infection

Is it heritary? I have heard it isn't. But, also mothers/daughters..sisters..brothers will have MS

Will MS cause death? Many ask this question. Complications can cause death?

Is MS contagious? Many ask this question.

How is MS diagnosed? MRIs, Lumbar puncture, Evoked Potential...how do these tests detect MS. Also symptoms with test will dx MS.

Who gets MS? Anyone, but mostly white females living in northern regions. Myth of Men get it will become progress sooner.

Lack of Vitamin D possible linked to more frequent relapses, unknown if true.

Different types of MS. Benign, Relapse-Remit, Primary Progressive, Secondary Progressive. Most start with R R but it can usually lead to a progressive form, which the MS drugs do not treat.

What are the symptoms of MS? Many, Many symptoms that people don't understand. Many think just b/c a person with MS looks ok, that they are. Many think we with MS are lazy, complain for no reason, depressed/moody for no reason. Many don't understand the pain, balance issues, dizziness, blurred/double vision, numbness/tingling, sexual issues, and many other problems that affect the lives of people with MS. Heat Intolerance is a big issue.

How does MS affect the life of the patient and family? Affects so many aspects of life. Not being able to shower today b/c of fatigue/pain. Walking b/c our legs hurt and are too weak. Shopping/paying bills b/c we cannot work anymore. Not seeking med treatment b/c we lost our insurance and social security keeps denying us b/c of age and education. Losing a relationship b/c that people cannot deal with us anymore. Cannot remember things and we burn our food or flood the house. Not being able to drive b/c we can't see or can't use our leg to push the gas pedal. Oh and we get overexhausted b/c someone parked in the handi spot without needing it!

How is MS treated? Injections of Avonex, Betaseron, Copaxone, Rebif, known as the CRAB drugs. Lovely injections that cause flu like symptoms, chills, aching, site reactions, horrible headaches. We have to premed with Ibuprofen or even RX drug so we can tolerated the medication that will hopefully prevent progression. There are chemo drugs used. Tysabri and Rutaxan infusions that can cause the untreatable PML. Plasma exchange. The famous steroids used to calm our flares of MS exacerbations. Then we need muscle relaxers, pain medication, antidepressants, antianxiety, and sleep aids for all the MS symptoms. Oh and the fatigue meds such as provigil.

How many people have MS in the US? approximately 400,000 is the last number I have heard. Every day more and more find out they have MS. This is a scary diagnosis, b/c of the symptoms that led to the diagnosis, the uncertainty of how it will progress, very overwhelming.

Support is very important for ones with MS. Many times we feel very alone and our family and friends back away from us.

MS Society and how it helps those with MS. Finding physicians, equipment, support groups. There are also walks, bike rides, and other to support MS.

I am a 28 year-old white female, who was diagnosed with MS August 1, 2006 while travel nursing in Phoenix with my husband, two sons, and two cats. My first major symptom began end of May 2006. Went to bed fine one night and woke in the morning to find my entire left leg was numb. Two days later, still numb with the right leg becoming numb. I went to the ER and was hospitalized. I had MRI head and was diagnosed with complicated migraine. I was give pain/nausea meds but also a few doses of solumedrol. I did get better. June went alright. July came and I began having severe migraines, and my neuro gave me a few meds to knock it out. By the time August came I was severely fatigued, dizzy, losing balance, had the sqeezing around waist, numb waist down affecting both legs, blurred vision., fuzzy sensation on my face, and difficulty with my left arm. MRI this time showed several lesions. I used a wheelchair and then a walker for a few weeks.

September I tried to work again, but failed. My family and I moved back to Mississippi to live with my mother. By October I was hospitalized again and was using walker/wheelchair. I tried again to work in March, had problems with my legs still, but attempted to work. I had a nervous breakdown at the end of May and was hospitalized, and also had a MS flare at that time. August 2007 I tried to work again and did well for a while only needing oral steroids occasionally to manage some symptoms. I worked for 9 months before I had to quit April 2008 because my legs quit working. I filed for disability for the second time, and was denied 8 months later for age, education, and work history. I attempted to work again, but only lasted 4 weeks before I could not continue because of my legs, pain, and fatigue. I am on a walker full time, and has been since the end of June 2009. I am not able to stand, sit, walk for more than 20-45 minutes. Cannot drive for more than 20 miles on a good day. Pain is severe at times. I can only use the walker for short distances, considering a lightweight wheelchair. I have since lost my husband and custody of my younger son. I can no longer work. I am living with my mother and she has to care for me and my son, while she works a full time job. I feel so helpless, hopeless, and depressed because I was once independent, able, and enjoying life. I have to get assistance, such as medicaid, food stamps, and temp assistance.

I spend time online, it is my only social life, talking with others who have MS. So many, many are depressed, scared, and every day someone is newly diagnosed. Relationships are destroyed, independence is taken away, and fear is now a part of life at times.

Multiple Sclerosis is very unpredictable and many are unaware of the affects MS has on lives. Many underestimate the seriousness of this illness. Many thinks it is all in our heads. MS is missed by physicians, and at times the diagnosis is a little too late. Many neurologists are not comfortable treating MS. Many times we have to travel 80 plus miles to seek treatment.

I, along with thousands or people with MS would appreciate a show on Multiple Sclerosis to bring awareness of this illness, hoping it will bring a better understand to many who need this knowledge!