Chronic ITP and SSD

I have Chronic ITP. My Counts are somewhat stable and maintain in the 30K range unless I am sick or other complication arise. I am not a bleeder, but I do bruise. I also suffer from Chronic Migraines, between 16-22 per month since my daughter was born last year. I was diagnosed with ITP 10 years ago. I'm 38. I had my Spleen removed in 2005. I was placed on disability by to advisement of my doctor, hematologist. I fought like hell to be released off of disability because I truly believed that I could teach and stay healthy. Each year I ended up in the hospital and using all of my sick days as well as working without pay because I had been out sick so much. But each year, I resigned my contract like a good soldier and back to the classroom I went and back to the hospital I went. Counts as low as 0, with my doctor, husband, and family pleading with me to stop teaching. I don't know what else to do. I wasn't a mother like most of my friends. I was a teacher. After we found ourselves pregnant at 37, wow, and I had an IVIG pregnancy and now have a beautiful healthy daughter, my doctors, my husband, and family don't sound so silly any longer. Being in the hospital when it was just me was fine but now with our daughter, it doesn't feel okay any longer. So upon the advice of my doctor and husband, I applied for SSD. My claim was denied... I have a legal right to appeal within 60 days, but I didn;t know if I was alone in this or if there were others out there like me. I thought I was alone when I first diagnosis...I had never heard of ITP before and it took 3 years before I learned of others, so I thought I'd reach out...

Lots of people are denied SSD their first time applying.
My dad is on SS and it took almost 3 full years of appeals and lawyers before he was "approved." Is it worth years of fighting? My dad seemed to think so. And they backdated the payments so he went from being in a scary financial situation to a decent one almost over night.

I think you should appeal and I think you should get a lawyer to assist you in the claim.

Congratulations on your daughter! I'm only 28, sans kids, so I get excited to hear the stories of people who have had babies with ITP.

Reaching out feels good, doesn't it? Keep reaching... there are so many people here that will reach back!

KayL Thank you and thanks for your Reply. I know of One other person that I met in another forum that was Approved on their appeal for SSD with Chronic ITP like me. He says that a lawyer is the only way to go as well. We've contacted an attorney. You are very correct about finding others and reach out. It does make it feel better and it help with the fear. If I could be that healthy teacher that came out of graduate school years ago, I would be. I didn't know I was going to have to battle with my health. I don't know I was going to become all to familiar with ITP. I've played by all the rules. I would rather work than have ITP. But i do think all of us are like this. I was so angry when i was first diagnosis and I have found some type of peace within my self through the years. And now, walking this path. Having to prove to a judge that I'm not as healthy as I should be to be able to what I could do to be a productive member of our society make me feel angry all over again. I don't know... one day at a time... If theres any one out there whose like me or has walked this path any and all comments and advice are welcomed.

Pshay:

Acquiring disability for ITP is difficult. There are some criteria that must be met:

The Social Security Administration (SSA) discusses disorders of the blood and circulatory system under Section 7.00 Hematological Disorders, and defines “chronic” as lasting at least three months. You must have been examined at least twice in that three-month period. Chronic Thrombocytopenia, regardless of the cause, is considered under Section 7.06. To meet the requirements of this listing, you must have a platelet count that is repeatedly below 40,000 AND have at least one of the following symptoms: at least one spontaneous hemorrhage which required transfusion within five months prior to filing for disability benefits OR you must have had intracranial bleeding within twelve months prior to filing for disability benefits.

www.socialsecurity-disability.org/disabling-conditions/chronic-thrombocytopenia-and-social-security-disability

The best thing to do is to get a lawyer and ask his opinion. Normally, they will not take a case that they don't think will have a chance, so you should know at the initial meeting if it is worth trying or not. You will probably have to add some other medical conditions that you may have other than ITP. You pretty much have to prove that you cannot work any job, not just the one that you are qualified for. That can be tough.

I am in the middle of waiting to be approved (or denied) right now. I quit my job in October and started the process. I have a very good lawyer who is on top of things. I had to wait for years to even think about applying because I knew if I quit my job, I'd have no health insurance. The company I worked for had less than 50 employees and COBRA wasn't an option until recently, when mini-COBRA became an option. I was covered by my employer and could not get on my husbands plan. Now I am paying for COBRA, which does not last more than 9 months unless I am approved by SSD. Then I have to wait for two years until Medicare kicks in. If I am not approved, I will have no health care coverage. It's a sticky process, and my doctors had a lot of paperwork to complete.

Here is a discussion from 2 years ago:

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/12286-reprimanded-at-work-for-an-itp-flare.html?limitstart=0

I was lucky. I was approved for my long term disability on the first go. It did take a few months for the approval to go through. Maybe it's different here in Canada.

Good luck!

It's a lot different in Canada. It's a long, sticky process here, and very few get approved on the first try.

Thank you. Ive had Chronic Itp Diagnosis for over 10 years. I see my doc every month. Ive never had a spontaneous hemorrhage that we know of to date that I required a transfusion. I have a attorney and we are proceeding with the appeal process. I was on disability in 2005 when I had COBRA. I fought to return to work in 2007. Whihc landed me in the hospital year after year. The chronic migraines ( whic are subjective in the judicial system) are the secondary issue complicating my itp because of the medicines I can take. I really appreciate your input. And wish you the best of luck with your situation. Keep me up to to date and if I canbe of any help to you, please let me know!.

Congratulations. Yes it is differnet in Canada. I am very happy that you are able to focus on health and healing now that you have financial assitance with your ITP. This is very good news to read being in Canda or the USA. Positive moves forward on the grounds of ITP is positive for all of us around the world.

Yes, that is how it was when I was teaching. Most principals were understanding even though they didn't understand ITP. Not only did I have to educate myswlf I had to educated my coworkers, my frriedns and family, and employers. I had two pricipals that were BULLIES about my ITP. They made me feel like I was faking some made up illness so I didn't have to come to work. Even though I was hospitalized, I had a splenectomy, and I had a team of Doctors from Johns Hopkins, Duke, and Roper Hosptial that all assisted with my case. It was incredible in the insensativity that I felt in the work place due to my ITP... even when I went on disability for a year, people would say things to me me like, "you don't look sick?, how does this disable you?, and my favorite was you just get to stay home and collect free money." ITP all most broke me emtionally. I felt I had to fight to go back to work because I had to prove to everyone around me that I wasnt "sick" and that I wasn't "broken." wow! what a journey...