Social SecurityDisability Benefits for Fibromuscular Dysplasia

Guest Blogger: Ram Meyyappan

 Senior Editor and writer for Social Security Disability Help

Social Security Disability Benefits for Fibromuscular Dysplasia

If you are suffering from fibromuscular dysplasia, the condition may have left you unable to work. Without the ability to work, you are left without an income and insurance. The lack of income and mounting medical bills can quickly spiral out of control. Fortunately, in many cases, Social Security Disability benefits can help. 

Qualifying for Social Security Disability Benefits with Fibromuscular Dysplasia

When you apply for Social Security Disability benefits, the Social Security Administration (SSA) will compare your condition to a listing of conditions known as the Social Security Blue Book (http://www.ssa.gov/disability/professionals/bluebook/). The Blue Book contains a listing of all of the conditions that could possibly qualify an individual for Social Security Disability benefits, along with the criteria that must be met in order to be approved for benefits under each listing.

Unfortunately fibromuscular dysplasia is not listed in the SSA's Blue Book. If you have an associated condition that is listed in the Blue Book, however, such as aneurysms or dissections, you may be able to qualify under those Blue Book listings. 

For those who are suffering from aneurysms, you could apply for benefits under Section 4.10 of the Blue Book. According to this listing, in order to qualify for benefits you must be able to prove that:

• You suffer from an aneurysm of aorta or major branches due to any cause
• The aneurysm has been demonstrated by medically acceptable imaging
• The aneurysm is with dissection and not controlled by prescribed treatment

If you do not have any conditions that are listed in the Blue Book, you may still qualify for Social Security Disability benefits under a vocational allowance. In order to do this, you must prove to the SSA that you are unable to perform any type of work activity that you are qualified for due to your disabling condition. For example, if you have only worked in a warehouse and your doctor has told you that you must avoid lifting and strenuous activity, which can strain the arteries, a written statement from your treating physician stating that you cannot continue to work due to your limitations may help support your Social Security Disability claim. This will affect the SSA's residual functional capacity assessment of your condition.

Technical Requirements for Social Security Disability Benefits

In addition to proving that you are disabled according to the SSA's guidelines, you must also meet technical requirements to be eligible for Social Security Disability benefits. There are two different disability programs available from the SSA and both have their own technical requirements.

Qualifying for SSDI

In order to qualify for Social Security Disability Insurance (SSDI), you must have earned enough work credits through your previous work history. If you are age 31 or older, you must have 20 work credits in order to qualify for SSDI benefits. If you are under the age of 31, you must have worked half of the years since turning age 21. For example, if you are 27, you must have worked for three of the past six years to qualify for SSDI benefits.

Qualifying for SSI

If you do not have enough work credits to qualify for SSDI benefits, you may be able to qualify for SSI (Supplemental Security Income) benefits. SSI is a needs-based program. It is intended for low-income individuals and families. In order to qualify for SSI benefits, your monthly income cannot exceed $710 as an individual or $1,060 as a couple. Your household assets must also not exceed $2,000 as an individual or $3,000 as a couple. 

Applying for Social Security Disability Benefits

You can apply for Social Security Disability benefits online (http://www.socialsecurity.gov/pgm/disability.htm) or in person at your local Social Security office. If you are applying in person, make sure that you bring copies of medical records that prove that your condition meets a Blue Book listing, as mentioned above, or that you are unable to perform any type of work activity whatsoever. You will also be asked to fill out a number of forms. Make sure you fill out each form in its entirety and answer the questions with as much detail as possible so the SSA understands how your condition prevents you from performing any type of work activity. If you are applying online, you will be provided with a cover sheet that will allow you to fax your medical documentation in. You will receive a decision regarding your disability claim within three to six months of the date of your application. 

Article by Ram Meyyappan
Social Security Disability Help
www.disability-benefits-help.org/blog

Mayo Clinic Social Media Summit: Kari Ulrich's Patient Panel Talk

The impact social media is making on rare disease, an e-patient perspective.

March 3, 2011 Transcript from Twitter FMDChat

Midwest Women's Vascular Support Group

Twitter FMDChat is Tonight from 7pm-8pm CST! FMDChat is a Twitter Community to open communication and expand knowledge of FMD. #FMDchat

We will break down our chat into twitter questions- T1,T2, T3 so please reply according to the the tweet question. #FMDchat

FMDChat
FMDChat is open to the public and will cover topics related to Fibromuscular Dysplasia. #FMDchat

mdulrich Michael Ulrich
test #fmdchat

jenniferm7373 Jennifer Moreen
test #FMDChat

FMDChat
Welcome to FMDChat FMDChat is a Twitter Community to open communication and expand knowledge of FMD. #FMDchat

FMDChat
Our Chat will start in a moment, please take a moment to introduce yourself remember to use #FMDChat

FMDGirl Kari Ulrich
Kari here- FMD pt- carotids, renal, femoral and Mals! Looking forward to meeting you all! #FMDChat

FMDChat FMDChat
Welcome Roxy Girl! #FMDChat

jenniferm7373 Jennifer Moreen
I'm Jennifer Moreen in Minnesota, have FMD in coronary arteries, corotids, vertebrals, illiacs and right renal. #FMDChat

mdulrich Michael Ulrich
Michael Ulrich MD, Family Practice doc here for FMD chat. #fmdchat

FMDChat FMDChat
I want to remind everyone Brain Aneurysm Awareness week is March 14-20, 2011 http://joeniekrofoundation.com/ #FMDchat

FMDChat FMDChat
Welcome Jennifer! #FMDchat

FMDChat FMDChat
T1- How has FMD changed your life? #FMDchat

FMDGirl Kari Ulrich
T1- I have a lot of pajama days!! #FMDchat

mdulrich Michael Ulrich
T1- FMD has changed life significantly. Learned there are good days / bad days. #fmdchat

FMDChat FMDChat
I get it roxy! I think it has invaded every vascular bed in my body! #fmdchat

jenniferm7373 Jennifer Moreen
My life has changed significantly -- lots of meds, lower energy, a new "normal" that is hard to get used to. #fmdchat

FMDGirl Kari Ulrich
I am on 4 blood pressure meds and my BP still is not in good control, very fatigued- biggest complaint I have #FMDChat

FMDGirl Kari Ulrich
Jennifer and Michael- how much do you think the side effect of BP meds contribute to fatigue vs the disease? #FMDChat

jenniferm7373 Jennifer Moreen
That's a good questions. I think meds are a big factor - the b.p. meds slow everything down. The disease itself? Not sure.. #fmdchat

FMDChat FMDChat
@RoxyGirl1013 I understand be scared being by yourself! #FMDChat

mdulrich Michael Ulrich
I think that BP meds can contribute to fatigue in many ways. But every person with FMD is unique. #fmdchat

jenniferm7373 Jennifer Moreen
For me a good day is: no headache, enough energy to work and get things done and stay up until 10 p.m. #fmdchat

FMDChat FMDChat
T2- What do you want Doctors to know about your disease? #FMDchat

jenniferm7373 Jennifer Moreen
Not sure if this is the right forum, but Michael, I'm curious of your thoughts on adding CoQ10 for energy and cell health. Risks? #fmdchat

FMDGirl Kari Ulrich
I would like for docs to understand FMD is a VASCULAR DISEASE, we need close monitoring, we need a team of physicians #FMDChat

mdulrich Michael Ulrich
My understanding is that CoQ10 is a natural substance produced in the body. Statins deplete it. Thumbs up! #fmdchat

mdulrich Michael Ulrich
I also think that a good omega 3 fish oil is important. #fmdchat

mdulrich Michael Ulrich
Agree Kari - patients need a doc who knows FMD and can follow them regularly. #fmdchat

jenniferm7373 Jennifer Moreen
Good to know, thanks! I've been told by my cardiologist and other docs to take fish oil supplements. Very helpful. #fmdchat

FMDChat FMDChat
@RoxyGirl1013 FMD patients are very knowledgeable in their disease, many docs learn from the info we bring them to the office #FMDChat

CuteNicuNurse Jen W.
Very!! :)RT @mdulrich: I also think that a good omega 3 fish oil is important. #fmdchat

FMDChat FMDChat
T3- What helps you get through a day with FMD? #FMDchat

FMDChat FMDChat
Welcome @CuteNicuNurse- we are chatting about FMD a vascular disease- just curious have your heard of it? #FMDchat

FMDChat FMDChat
@CuteNicuNurse FMD can affect infants too! It can lead to stroke, kidney problems- depending on the vascular bed #FMDChat #FMDchat

mdulrich Michael Ulrich
I also think diet important - specifically diet low in too many "quick carbs". #fmdchat

PracticalWisdom Lisa Fields
Sorry for the interruption but wanted to give my Blessings for your Chat tonight. #fmdchat

PracticalWisdom Lisa Fields
I'm Lisa Curious Adult Education Scholar who morphs the ho-hum into compelling. Speaker, Trainer, Presentation Designer, Rascal. #fmdchat

jenniferm7373 Jennifer Moreen
Michael, I agree 100% about diet, but curious why specifically quick carbs. #fmdchat

mdulrich Michael Ulrich
In terms of diet - I am speaking of general cardiovascular health - not just FMD! #fmdchat

FMDChat FMDChat
Thank you @ParticalWisdom for joining us! #FMDchat

FMDChat FMDChat
I disagree with the quick carb having anything to do with FMD #FMDchat

jenniferm7373 Jennifer Moreen
Got it. So true because quick carbs drain our energy overall, which is the last thing we need! #fmdchat

mdulrich Michael Ulrich
A diet balance of too many quick carbs leads to high insulin which is bad - need to avoid insulin spikes. #fmdchat

FMDChat FMDChat
Jennifer that makes sense to me. #FMDChat

jenniferm7373 Jennifer Moreen
I'm curious if anyone feels that FMD has had any positive influence on their life... any new, good things to come of it? #fmdchat

mdulrich Michael Ulrich
Too many insulin spikes could lead to insulin resistance and type 2 diabetes which can increase to heart disease risk - #fmdchat

mdulrich Michael Ulrich
All FMDers need to minimize ALL risks for heart diease. #fmdchat

FMDChat FMDChat
You are right @cuteNICUNurse, very rare in infants, I am curious if SIDS could be connected to FMD in some cases #FMDchat

FMDChat FMDChat
@CuteNicuNurse FMD is not commonly looked for on autopsy #FMDchat

PracticalWisdom Lisa Fields
@jenniferm7373: That's a great Question. I'd also like to know if there is any new research coming out. Where do you find hope. #fmdchat

FMDChat FMDChat
Jennifer- positive influence- YES! I am much more proactive in my health and respect my body much more #FMDChat

jenniferm7373 Jennifer Moreen
@PracticalWisdom Many of us are in various studies, not much is known yet about FMD but we're trying to change that #fmdchat

FMDChat FMDChat
Great Question @PracticalWisdom! http://bit.ly/fxZon7 #MCCSM #FMDChat

PracticalWisdom Lisa Fields
@jenniferm7373 I'm impressed that you and @FMDGirl are working so hard. We must get the word out I"m impressed with the efforts. #fmdchat

mdulrich Michael Ulrich
one big source of research will be the FMD patient registry through FMDSA. #fmdchat

FMDChat FMDChat
FMD Research: http://bit.ly/e9jMLO - More money is needed for research #FMDchat

mdulrich Michael Ulrich
much of the research has been driven by Dr Jeff Olin and other dedicated Vascular docs. #fmdchat

FMDChat FMDChat
@PracticalWisdom you have been a great strength and resource, I am grateful for your wisdom ;) #FMDChat  

FMDChat FMDChat
T4- How can FMD awareness be spread more quickly and accurately? #FMDchat

PracticalWisdom Lisa Fields
Looks like an Impressive MD: Dr. Jeff Olin-http://www.mountsinai.org/profiles/jeffrey-w-olin #fmdchat

jenniferm7373 Jennifer Moreen
Thank you, PracticalWisdom. I'm new to twitter and don't know how to reply to you w/the @ sign! LOL #fmdchat

FMDChat FMDChat
Roxy asks: Michael, curious to know your opinion on the correlation between FMD and adhesions, if any.#FMDchat

mdulrich Michael Ulrich
Patients also benefit from an "FMD Clinic" model where they can be followed. Cleveland Clinic with Dr Heather Gornik is example. #fmdchat

PracticalWisdom Lisa Fields
@jenniferm7373: My pleasure. You are doing great. My Big secret is TweetChat. There are columns that give quick choices. #fmdchat

FMDChat FMDChat
Roxy: Don't forget to take the FMD patient retreat survey! http://www.surveymonkey.com/s/YKBHN2X #FMDchat  

mdulrich Michael Ulrich
re question about adhesions and fmd - I agree there is correlation and likely related to connective tissue component. #fmdchat

PracticalWisdom Lisa Fields
RT @mdulrich: Pt's benefit from an "FMD Clinic" model. where they can b followed. Cleveland Clinic Dr Heather Gornik is example. #fmdchat

FMDChat FMDChat
@PracticalWisdom I am still learning tweetchat- we need to have a phone conference Lisa :) #FMDchat

mdulrich Michael Ulrich
my question is how many out there have fmd and are asymptomatic? #fmdchat

FMDChat FMDChat
My dream is that Mayo Clinic Rochester get an "FMD Clinic" it is so needed! We need a team of docs #MCCSM #FMDChat  

mdulrich Michael Ulrich
to what extent does fmd "spread" in a patient - and what are the triggers? #fmdchat

PracticalWisdom Lisa Fields
What R classic symptoms might be missed?RT @mdulrich: my question is how many out there have fmd and are asymptomatic? #fmdchat

FMDChat FMDChat
We are about out of time- I want to thank each of you for participating in our first FMD Chat! #FMDchat

jenniferm7373 Jennifer Moreen
Good question about asymptomatic people. There are likely very many. Many of us were basically symptom free until a crisis hit. #fmdchat

mdulrich Michael Ulrich
classic symptoms depend on where FMD is. In carotids it is the "whoosh" sound with a bruit. #fmdchat

FMDChat FMDChat
Thank you so much for joining us on FMDChat. Please check back for our next FMDChat date and time! #FMDchat

FMDChat FMDChat
Questions about FMDChat can be directed to mwva@me.com #FMDchat

mdulrich Michael Ulrich
other symptoms can be secondary related to hypertension and other effects of the disease - fatigue, headaches, etc.. #fmdchat

FMDChat FMDChat
Don't Forget! Brain Aneurysm Awareness week is March 14-20, 2011 http://joeniekrofoundation.com/ #FMDchat

mdulrich Michael Ulrich
of course, fmd can lead to strokes, heart attacks. #fmdchat

PracticalWisdom Lisa Fields
Thank you so much for the information and chat tonight. How exciting to have your first FMDChat. Congrats! #fmdchat

FMDChat FMDChat
Goodnight everyone! Thank you!! #FMDchat

PracticalWisdom Lisa Fields
Good night @FMDGirl @mdulrich @Jennifer7373 http://www.youtube.com/watch?v=cp7_u0kcQRo #fmdchat

PracticalWisdom Lisa Fields
@FMDChat: Congrats on First #FMDchat. Proud U R my Friend/Teacher. http://www.youtube.com/watch?v=axLRUszuu9I

Dear Doctor

Dear Drs,

I am writing to you today on behalf of patients diagnosed with Fibromuscular Dysplasia (FMD).

We want you to know that FMD is a vascular disease that is non-inflammatory in nature. FMD causes artery stenosis.  We understand if you have not heard of our disease before, it is under diagnosed and you are fortunate if you heard about FMD in med school. Please don't judge us because we "look healthy", many of us have been sent home from the ER with dissections, and end up with strokes. This can be prevented. Our general population is young women. Many of us are physically fit, eat healthy diets and we do not fit the stereo type of someone with a inflammatory vascular disease.

One of our frustrations as patients is that we do not receive the proper care and follow up. At this time there is no treatment protocol, but that will change in the near future. Until then we need to be vigilent in our health care. We have discovered that because there is little known about our disease that we have to advocate for ourselves. You will discover rather quickly that as patients we are very informed about our disease and how to manage it. We need your help and guidance in managing our care. We rely on your experience and education to guide us through the many decisions we must make to ensure that we have the quality of life we desire. We are asking to be partners in our health care.

Mayo Clinic Rochester ICU post op celiac bypass

Here our some of our greatest needs:

1.  FMD patients would like to have some kind of plan of care,  a

written form of follow up with what is needed to monitor their disease.

ie All patients with carotid FMD being put on a surveillance program of

every 6 months ultrasounds,  and have a MRA to check for intracranial

aneurysms. (we understand this will greatly depend on each patient as we

are all so unique.) Also communication with their primary care doctor is

important to them.

2.  When patients go to the doctor they would like to receive some form of

information regarding FMD, a handout something tangible. Cleveland

Clinic has written up a four page handout outlining the types of FMD,

How it is diagnosed, What treatments are available, etc.  They give this

out with a folder that contains information on vascular disease to newly

diagnosed patients.

3.  At some point patients  would like to see a team of doctors

interested in FMD that can address all their needs.  Many of us have

overlapping connective tissue issues that seem to contribute to our

overall well being.

I understand what we are asking for comes at a cost, but I do believe

the revenue generated from FMD patients for monitoring our disease is imperative.

Preventing a future event ie stroke, dissection, loss of kidney
will help reduce the cost of of our care.

I appreciate you taking the time to read this blog.

Warmest Regards,

Kari Ulrich RN,  FMD Patient

Midwest Women's Vascular Advocates

www.mwva.org