Financial issues

Discuss the impact of having a rare disease on your financial health. Have you found resources that others should know about?

Discussions

Share your advocacy stories

• By sromesgene · Posted May 14, 2013
• 0 replies
• Genetic Alliance is partnering with Parent to Parent USA (P2P) and Family Voices (FV) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families ...

Tarlov Cyst Disease

• By lifesaver · New reply April 23, 2013
• 4 replies
• Just wondering how many of you guys are suffering with relentless pain and have been denied disability? I've worked 2 ERs for 14-15 years @same time & gave it up last July for a slower paced job because ...

Some Hope for Those with Ehlers Danlos

• By EverydayRapunzel · Posted April 21, 2013
• 0 replies
• There is currently a petition on the White House website to get Ehlers-Danlos Syndrome recognized as a disability in the United States. I'm sure many in this group have struggled with pain and the ability ...

financial assistance for Evans syndrome

• By kathym9 · Posted April 1, 2013
• 0 replies
• I am a care coordinator at a pediatric office. The son of one of my co-workers has recently been diagnosed with Evans syndrome, and this has placed a huge financial burden on the family. They have health ...

I implore you, assist me.

• By GumbyDav · New reply March 31, 2013
• 2 replies
• Hello, how are you today? I'm David and Gumbydav on YouTube. I created YouTube videos to spread awareness about Ehlers Danlos Syndrome (EDS), and I have a severe case of the Hypermobility Type (EDS-HT ...

Diagnosis-Based Assistance

• By Reruho · New reply March 21, 2013
• 3 replies
• I receive the NeedyMeds newsletter. NeedyMeds is a 501(c)(3) non-profit information resource devoted to helping people in need find assistance programs to help them afford their medications and costs ...

Social Security Disability

• By Peludo · New reply February 9, 2013
• 39 replies
• I have stiff person syndrome and started treatment in March 2012. I have been unable to work since February 2012. I applied for disability and was denied. People tell me that 90% are denied the first ...

Another bone marrow biopsy test?

• By smile568 · New reply December 21, 2012
• 9 replies
• Here I am AGAIN at this point where I get to decide if I should say yes to another bone marrow biopsy test. I am between a rock & hard place or damned if I do and damned if I don't have it. I had one ...

My daughter set this website up for me

• By katcam831 · New reply December 7, 2012
• 9 replies
• My daughter found this site online that assists patients with fund raisers with their medical needs whether it is for cancer treatments, surgeries not covered by insurance, medical equipment, etc. It ...

IN NEED OF URGENT HELP!!!

• By katcam831 · New reply November 24, 2012
• 7 replies
• I became permanently disabled 4 years ago when I became a victim of RSD/CRPS. I honestly wouldn't wish this disease on ANYONE (and that includes my ex-husband even). I lost my job shortly after receiving ...

TUBERCULOSIS DISEASE

• By Tukei · Posted October 10, 2012
• 0 replies
• Dear viewers, My Mom has suffered for over 30 years of tuberculosis. Am an Orphan without a Dad. financial down, a student. My Mom is the only one i have. Please i seek for help in any form; advise, financial ...

need help

• By sumofme (Inactive) · New reply September 1, 2012
• 6 replies
• My name is Stacey, I live in UT. here is my situation; The dr.'s found 3 cysts growing on my spinal nerve roots by my sacrum, the dr.'s said not to worry there is nothing they can do for those, so I thought ...

Tarlov cysts disease/my name is Stacey

• By sumofme (Inactive) · New reply September 1, 2012
• 4 replies
• The dr.'s found 3 cysts growing on my spinal nerve roots by my sacrum, the dr.'s said not to worry there is nothing they can do for those, so I thought nothing of them; because I was having really sharp ...

CHANGING WORK HOURS

• By Bassetgirl · New reply August 1, 2012
• 2 replies
• My fatigue differs with each day. But- on weeks that I work Monday thru Friday- I feel like a wrung-out dishcloth by Thursday, and pretty much the same every day around 3PM. Has anyone recently cut their ...

RSD/CPRS

• By christinek59 · New reply July 26, 2012
• 5 replies
• RSD/CPRS seems to be a no-no for CIGNA insurance. Any hope for relief is not covered by insurance. Does anyone know how to get through to insurance companies? Please help me if you have some ideas! Thanks ...

mastocysis type IV

• By KarieARadtke · New reply June 27, 2012
• 2 replies
• Does anyone know the definition of mastocysis type IV? I see that you can now collect social security disability ...

Situs inversus with dextrocardia

• By Lili75 · Posted May 24, 2012
• 0 replies
• Hi, Im a mother of 2 kids with situs inversus with dextrocardia. My older kid (13) has been hospitalized with a lung disease and the doctor said my younger one (5)can have the same disease :( The doctor ...

Eosinophilic Disease

• By LucyHeart · New reply May 5, 2012
• 6 replies
• I don't know how long I have been on Inspire but this place has really helped me. I am still searching for answers to my health problems. A few months ago I came across a disease called Eosinophilic Disease ...

Mal de Debarquement Syndrome

• By Nevamarie · Posted April 11, 2012
• 0 replies
• I am wondering if anyone has successfully navigated the choppy waters of disability with MDDS. I was just diagnosed and I know that I have great difficulty trying to make it through one full work day ...

medication ?

• By cojaygi · New reply April 3, 2012
• 2 replies
• Hi again. Since this whole order has taken 3 years to diagnose it has pretty muc bankrupted me. So I'm wondering if I can take cimetidine 200 mg instead of rantidine 150 mg which I was taking 2 twice ...

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