Sticky Blood-Hughes Syndrome Support
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PLEASE HELP! Anyone in the United States won social security disability? Any pointers would be helpful! My twin sister needs help!

My twin sister Heather, who used to post on this site is 32 yrs old and was diagnosed with APS in 2007 after a massive PE and clots in her lungs that cost her most of her right lung and in her kidneys. She has developed a stutter and memory loss to the point that she can not function at work as a paramedic. she cant even live alone anymore. She has a 3 yr old son whom she cant hold because her fribrolmyalgia is so bad. She applied for disability last year, was denied, and now we finally have a court date to appeal it. APS is not really recognized as debilitating in the social security system and this has been an uphill battle all the way. Her insurance dropped her and she cant afford her warfarin and Lovenox anymore PLEASE PLEASE Any info we can use to help her case would be greatly appreciated. Loving wishes to you all suffering from this awful disease. Thank you. Mel S

20 Replies

Hello, I am sorry you are both having such an awful time, life is so unfair at time and the discrimination your sister has been exposed to must be awful when so ill. Hopefully others in the USA will see this post and offer some suggestions. My suggestion is that Professor Hughes often mentions the trio of APS, Sjogrens and Thyroid problems..... I am guessing that the fibromyalgia is untreated thyroid problems. This would make her feel truly awful, and add to how unwell she is! I hope you can get the help you deserve. Best wishes, and please keep us updated. Mary F


Fibromyalgia is a chronic pain syndrome. It has nothing to fo with thyroid issues. I to have fibromyalgia and it can be very painful. It is of unknown cause or orgin, but is believed to be how our brains conceive pain signals. I sympathize with your sister. While it is not autoimmune it is an awful syndrome, that is recognized by social security and can be used to get ssd or ssi benefits if it is bad enough..


Hi there... I understand that this is a chronic pain issue, and at times this is very much connected to thyroid issues.. some practitioners feel that to be the case...but like many things, it does divide opinion. However that does not mean that I think,... that you can't have it and thyroid issues are ok. Best wishes, MF


What Mary is saying is correct. An undiagnosed Thyroid problem like Hashimotos can give symptoms very similar to Fibromyalgia and if not treated properly will not give good symptom control. Hashimotos is linked to APS so its always a good thing to get your Thyroid checked out.

That said, if the thyroid has been checked and a firm diagnosis of FM given, then it sounds like the Fibro is what needs the attention at the moment in order to get some good quality of life. Her medications need to be looked at, sleep hygiene an absolute must and if she has problems with her spine (cervical) then this should also be looked at too.

Here is a link to an excellent FM Doctor in the USA Dr Andrew Holman MD a Rheumatologist and Associate Clinical Professor of Medicine at the University of Washington who would talk to you or your Doctor if you needed any help. He has just been to the UK and done some talks here so if I had the opportunity I would jump at it if I lived in the US and needed any help. He also knows a thing or two about APS which is nice, does not profess to be an expert but enough and is one of the nicest people I know. A Doctor that really cares about his patients.

From the Disability side of things you have been given some excellent advice from those living in the USA. Please let us know how things are going and good luck. :-)


Yes and as Professor H, himself often says, that trio of APS, Sjogrens and thyroid issues, which so often come together. Great information swapping and sharing on here. Any pain, whatever the label/diagnosis.... frightful, and anything we can all do to collectively help each other is great! Mary F x


My suggestion for your sister is to get an attorney who specializes in disability. Doing this herself is only going to worsen your sister's condition. My diagnosis was considered terminal and so I was immediately disabled and didn't need an attorney. But if you look at the big picture, disability for autoimmune diseases is very difficult to achieve if that is your main diagnosis. She should not be functioning as a paramedic at this time and I am assuming she is on temporary disabiliity not being able to lift or inject or function in the job. She should not be picking up her son if she knows her body cannot. She can hug and find other safer ways to cuddle, snuggle and touch him. He'll figure that part out.

Most attorneys don't charge until they wil the case. I don't now where in the USA you are and I would only be able to recommend firms in my area. Remember if she achieves permanent disability that is her social security for the rest of her life. If this is temporary disability and she may go back to work using her paramedic knowledge in different ways. Orthos are using them instead of nurses. The OR can always use a paramedic for coordination of cases. Any ER can use a paramedic. My son's high school has a paramedic on staff for their sports team. I don't know who's hiring there but paramedics can do lots of stuff now that don't include lifting or the amount of stress one would think with that job. (Considered to be one of the top five most stressful jobs) A legal consultation costs zero. I suggest you set up a consult with a social security/disability legal firm and see exactly how this will affect your sister now. This is the same stuff that Obama is changing about now with social security so what is now, may not be in 5 years. Right now I think an attorney consultation on long term, short term, and permanent disability is something your sister needs to consider. You will need more than one doctor's opinion. The attorney will also fight the insurance company who dropped her and make them pay her back to include compensation for pain and suffering.

Discounted drugs: She can get up to 75% of her drug cost cut and perhaps even 100% depending on the drug firm. It works anywhere in USA, for anyone whether you have insurance/drug insurance or not. or 1-800-776-0760. I have used this several times when we hit the dredded "hole" at the end of the year. I usually hit it in December even though I have Aetna Drug Insurance. I max out around Nov/Dec and get the rest of my drugs on this card at 75% discount. If you have no insurance she can use this as her sole drug card and at least get the discount. They don't do things like birth control. One of my drugs is a little over $500/month and I get 75% off from the manufacturer.

Tell her to THINK CAREFULLY about what she wants to do. The medical field doesn't seem to have her sorted yet so I would suggest:

1.Conferring with an attorney asap. Go with her. Prepare your questions in advance, bring previous paperwork pertaining to the case (make them take copies and keep your originals) and write his answers down right then and there in the office.

2.Ask her to start a daily journal. This could very well help her in court. Take photos of visible symptoms, rashes, red marks, swellings, and time and date them. Rate her pain on a scale of 1-10 every day. She should rate her mood as well. Use this journal as her second memory. Keep a list of medical pathways so that she has dependable resources she can clip for her attorney as well as herself and educating the court. She should use this journal to rant in and keep track of ongoing symptoms. (This may help in court later)

3.Ask for letters from her doctors to support disability.

That's all I can think of off the top of my head, but if I think of more, I'll write. I hope it helps.

I am so sorry she is having such a bad time right now, but tomorrow will be a better day with new surprises. She is very lucky to have you as a sister willing to help her. If you get fed up with it, which you shouldn't once you hand it over to the attorneys, you can rant here on this forum. It helps. You get help. You can help others.

Warm wishes for better days around the corner.



Very useful info! Mary F x


I would get ahold of your congressmen/women & representatives. I would not have gotten my Social Security disablilty without them. Good luck to you and wish life could be better for your family!!!!!


Hi, yes it is hard to get ssdi or ssi for aps, as it is not a reconized disability here in the usa. Luckily, fibromyalgia is. Chances are if your sister is going to a hearing then she should be approved. Sadly, once approved for ssdi and medicare the Medicare will not kick in for 24 months, and she will still pay alot out of pocket for the lovenex. I have been there hon, took me three years to get approved, good luck.. :)


Yes, do find an attorney and do contact your senator. Good luck.


Hi Mel,

I live in the US. Got my SSDI in 1999 without an attorney, but I know it is much more difficult now. My disability was for Chronic Fatigue Syndrome and I got it first time around. My advice, as folks above say, is to go for the fibromylagia. (which is very close to chronic fatigue syn.) Have it absolutely well documented. I had a diary in which I wrote down how I felt and functioned for 8 months or so prior to applying. My mom, with who I lived at the time, helped me fill out the forms and it was very helpful as she also was able to write how I functioned and felt. Any and all documentation which supports her inability to function needs to be kept; does she need a cane, papers from work, a statement from prior boss/co-workers, etc. Be imaginative, I had a neighbor write a note. The more you load them down with, the more they have to look at as evidence.

I understand that attorneys are needed these days. You mention expenses. That is tricky and I'm sorry. Don't know how to advise you there; there are many tricksters but I would look up attorneys which specialize in SSDI and certainly there are others like you who have financial problems. After a year on her SSDI she will qualify for Medicare; it has made such a huge difference in my life and I wish her all the best of luck. Let us know what happens, please.



I found that the local attorneys who are listed as Disability experts were all OK but then I don't live in a big city.....I suggest asking and reputable attorney (even if they do not take these cases ) for a recommendation


Find a lawyer that handles Soc. Sec. Disability claims...they usually only take a small % of the $ awarded ...for example if your sister was ill for 8 months....she will get "back" payments and the lawyer only takes a % of that amount.....nothing going forward...that is what happened to me.......also when you describe your "disability" don't just give the diagnosis

in detail list how your disability impacts daily functioning......for example....when I was ill I had "cognitive" impairment ("foggy brain") I was so weak I could hardly get out of bed fact I was all ready to begin a new job....well paying and all...and simply could not ...also APS is even though I have good days I never know when I will experience a "flareup"

and if I get 'stressed'..overtired etc. I certainly begin to feel ill

I don't know if my case was easier because I had civil service job and I had been out on

"sick leave at 1/2 pay" on and off for over a year....and had to document such to my employer....and I was 62 years old....

good luck.....speak to an attorney


and one more suggestion.....I took my lab work to the MD working for SOCial security that had to evaluate me.....and I also took information re: APS from Cornell-Weill /Hospital for Special Surgery Division that handles Autoimmune Disorders and they have lots of information on APS......nothing like info from a well respected research hospital

good my opinion "chronic fatigue/ Fibromyalgia" is too vague for some MDs


I agree with what Lulsa says, ".in my opinion "chronic fatigue/ Fibromyalgia" is too vague for some MDs". However, SSDI does award it for Chronic Fatigue/Fibro and that's how I got mine. So, if your doctor believes in your sisters fibro then that is vital. My doctor believed in mine at the time (have had doctors who don't). That's why I suggest having a daily log of symptoms/how much you can do/etc.; my case worker at Social Security found that very helpful for my case.

Again, best of luck!


Social security has a cap on what a disability attorney can charge you, that cap is 5300.00. Unless you lose all appeals and have to see seek resolution at a federal court level, then they can charge 50% of your back pay. It took me three years to get approved and I have done extensive research on social security disability... good luck..


Lot of good info from all angles coming on this post. I hope you feel more supported now, and the best of luck with your case. Mary F x


Your sister can get a 30 day supply of warfarin for $4 at any Kroger, Wal Mart, or Target. A 90 day supply is $10. Good luck with everything.


I just want to say to EVERYONE that replied THANK YOU SO VERY MUCH! The info and support is both overwhelming and refreshing! We have hired a disability lawyer who will only charge if we win and the tips about reduced cost prescriptions were very helpful as well. I can't thank you all enough. It is great to know you are all here with your experience and understanding. I am sorry that you all have this disease. my sister has deteriorated rapidly in the last 4 years and I have to help her. I will keep you all posted but please know that you are all in my prayers and I wish only the best for you. Thank you again from the bottom of my heart. Mel S.


Hi! Yes 1) find a good doc who knows this is a disability. I read somewhere that APS is recognized as a disease on a list - look into it! Don't forget it's a syndrom YOU have MIGRAINES FATIGUE JOINT PAIN your doc MUST use those. If you had a TIA or STROKE write those down too! Your doc has to write how your life has changed and you can no longer do your daily activities. You will be rejected TWO (2) times by SSD - then they will give you a case worker to help you and he will give the judge info on you. They ALWAYS reject you the 1st time. DO NOT give up! It took me 2 yrs but I finally have it. They will reward you back to when you orig filed. I filed right on line to start. Do it. We don't get better.

debi in fl w APS


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