Sara's Susac Syndrome-please help
In December 2015 after being sick with migraine-like headaches, extremity numbness, gastrointestinal infections and vertigo for 5+ weeks, seeing numerous Dr.'s and finding no answers or diagnosis we were feeling hopeless. We knew Sara was sick but none of the Dr.'s knew what was causing Sara’s symptoms. On Dec. 3rd Sara woke up with part of her vision gone, immediately called and saw the family eye Dr. who sent her to a retinal specialist. She saw a different retinal specialist the next day. He said she needed an MRI and blood work immediately. He felt it was either an infection or an auto immune disease. The MRI showed brain lesions (or spots) on her brain. She was immediately admitted to Swedish Hospital in Englewood, Colorado on Dec 5th. In the hospital they did a spinal tap to test the spinal fluid and her blood was sent to New York, Atlanta, and Minnesota. After several days of tests, she was released Dec.10th. The Opthamologist gave her a definite diagnosis of Susac Syndrome, which is a rare Auto Immune Disease that is still being studied and causes your immune system to attack your body. This disease causes (BRAOs) which are Branch Retinal Arterial Occlusions (blood clots) causing vision loss. She was immediately started on 80mg of prednisone (a steroid). This disease only affects young women, causing vision, hearing and memory loss. Because the symptoms are so debilitating it usually renders these young women unable to return to their professional careers. Sara attended college for 6 years and graduated from Colorado Christian University in the spring of 2013 with a Bachelors of Science in Nursing. Since graduating she worked at St. Joseph Hospital as an Orthopedic nurse for 2 years. Since the summer of 2015 she’s been working on the Cancer floor as an Oncology nurse. Her dream has always been to help other people. She has now had to leave her R.N. position at St. Joseph Hospital, and probably will be unable to return to her life long passion. Going forward she will need to be hospitalized monthly to receive (very costly) IVIG infusions. These may or may not be covered by insurance (since this disease has only been identified since 1979.) Side effects from the steroids and infusion meds are similar to having chemotherapy-awful dreams, insomnia, taste changes, and debilitating headaches and stomach aches. She also started immuno- suppressants to suppress her immune system, which could place her in the hospital due to the most minor cold or infection. There is no cure for this disease, and once it is (optimistically) controlled, in 12-24 months, she will continue to have "flare-ups" the rest of her life. It's very hard for the whole family not knowing what the future holds for her. Our faith in an awesome powerful God is what we cling to, knowing that miracles can still happen. And that is what it will take for Sara to be free of this dreadful disease. Sara will have many medical bills in the tens of thousands and we are asking for your support through the GoFundMe foundation.
One of the hardest parts about this is admitting and sharing this story with everyone. But any donation amount is greatly appreciated as we can not do this on our own as a family.
Thank you very much.
-The Perea Family-
Sara has now been working 2 nights a week (mostly weekends as they pay more) for the last 7 months on the Oncology Unit and finding it more and more difficult to complete these shifts.
Unfortunately, she threw her back out on September 8th, 2017-Preempting an emergency room visit, a primary care visit, and A LOT of testing. She had a bone density scan, x-ray, and MRI of her lower back which showed osteoporosis and bulging discs that are sitting up against the nerve root. They believe most of this is a result of side effects from the medications she has been on for almost 2 years now. Sara started physical therapy for her back on October 10th and has been working therapy in twice a week, along with trying to work at the hospital, and following up with doctor's appointments. She is planning on seeing a spine surgeon to see if she would benefit from steroid injections or back surgery with her given Susac Syndrome history. Sara has also scheduled a consultation with an eye surgeon to remove her cataracts sooner than later (hopefully in December) as they have been causing more blurry vision and trouble seeing when driving at night or early mornings. Her last angiogram scan looked stable-with no new inflammation. There are still a few spots of inflammation in her peripheral vision, that her doctor will be keeping a close eye on.
She recently decided that she will longer be able to fulfill her nursing duties as a bedside nurse. These are such long shifts on her feet and working at night is not ideal for her sleeping schedule. It has been advised by her neurologist back on October 12th to look for a part-time position during the day to allow her body to be on a "day schedule" and to keep a more consistent sleep schedule. Sara complained about "feeling out of it" over the last few weeks and had an MRI October 23rd, 2017 to rule out any new inflammation, infarcts, or lesions. She received those results a few days later and she had no changes. Her neurologist believes that it is either lack of sleep or the Susac Syndrome disease process causing these episodes of uncertainty. Her job search has started and we are praying for something less demanding, but will allow her to still follow her passion in nursing.
Sara finally has a date for her Social Security hearing (Feburary 27th, 2018) to determine if she will receive government benefits/assistance to pay medical bills and other related expenses that she has currently not been able to pay. She found out that many of her bills have been sent to collection agencies and will be reported to the Credit Bureau as of December 27th, 2017. Sara has strived for the past 2 years to try and pay her medical bills on either payment plans or through donations, but her medical bills over the past few months have been compounded by injuring her back. If there is anything you can give during this difficult season it would be extremely helpful for Sara not have to worry about bills and along with her illness.
Please pray for guidance as she continues to look for a new nursing job.
The Perea Family
We haven't updated in over 13 months and since our last update many things have changed in our lives so we thought we'd catch everyone up to speed. This post will include our update from April 2017 as well as the update from October 2017.
Sara experienced an aura and some numbness and tingling on March 30th and had an MRI performed April 3rd. They found no new lesions or infarcts. These results provided us with some reassurance and definitely put our minds at ease.
Her last ophthalmologist appointment was on Tuesday, April 11th. He found some inflammation-which was seen in other angiograms, however the inflammation seemed to be more prominent in this month's scan. Moving forward with this news, Sara will not taper off any medications until the inflammation is not so relevant. Sara also spoke with her eye doctor regarding the constant blurry vision she experiences and he suggested they remove the cataracts in her eyes since they have progressively been getting worse. We will plan this surgery in the coming months. Medically, Sara is "stable." She continues to take 9mg of Prednisone as well as her immunosuppressants, blood thinner, and antibiotics daily. She was able to spread out her IVIG infusions at Porter Hospital to every 4 weeks, This has allowed Sara to return back to work at St. Joseph Hospital part-time in order to receive more affordable healthcare and benefits. In a way Sara felt like she was stuck between a rock and hard place-unable to pay her $800.00 monthly Cobra health insurance premium. She was ultimately forced back into working. She is happy to return to her previous Oncology Unit and took a night position 2 days a week, but it is still very difficult for her to work overnight. We are all trying to be optimistic for what her future holds.
Please continue to keep her in your prayers. Pray that she stays well enough to work, pray for healing, and most of all please pray that she will see her purpose in all of this!!
The Perea Family
Since our last update, Sara has titrated(gone down) on the Prednisone to 9 mg, from 80 last December! While this sounds good, even great, and is great, there are still great side effects she is experiencing. There is still tingling in the left hand, pain and pressure in her right eye, headaches, mental fogginess, blurry vision and daily fatigue. Due to some of these scary, nagging issues, she had another MRI on August 23rd, but it showed no new strokes. At her last exam with the opthamologist, 9-2-16, there was no new blindness, the cataracts were unchanged and the eyes are very dry.
She had the 3rd an d last infusion of Chemotherapy, Rituximab, on Monday 9-5-16. She had an allergic reaction but after mega doses of steroids and Benadryl, the itching calmed down and she was able to finish the infusion. Based on her good MRI's and eye exams, Cleveland Clinic has recommended that Sara decrease the IVIG infusions from every 2 weeks, to 3 weeks in October. Sara is still unable to work as of now due to these daily ups and downs. Possibly when the infusions are less frequent, she can find part-time work. She also received a phone call from CIGNA on 9-1-16, that they will be turning her over to COBRA-monthly premiums $800-half of her disability income currently. Sara will be attending another event for the charity, PINups for Charity, on October 15th. Check out their Facebook page for more details. Their yearly calendar will be released at that time.
During Sara's most recent IVIG this week, her blood tests showed Sara is now neutropenic, which means she no longer has adequate cells to fight off any bacteria or infections, AKA completely immunosuppressed. This presents a lot of complications for our family- a nearly 3 year-old baby who gets sick 4 times a year, and a school teacher who is around sick school children all fall and winter. Please pray that we can find a way to stay well these next few months ahead.
Thanks as always for your continued prayers and support.
Sara also saw her opthamologist, eye specialist, on May 31st, and besides blurry vision, and increased eye pressure, a side effect of the high dose steroids, there is no new blindness to report. Only the beginnings of cataracts, which is a side effect from the accumulative high doses of steroids. Not such good news there. She faces future surgery on her eyes and the unpleasant news that they will probably get worse.
She is still experiencing severe headaches, short term memory loss, mental fogginess, blurred vision, joint pain, ringing in her ears, and daily fatigue, but is still trying to eat healthy, exercise, drive, and do daily activities.
Sara has been denied for Social Security benefits, but will be working with an outside company to appeal this decision. She also found out that Cigna health insurance will turn her benefits over to COBRA Health, but the monthly premium will be $800.00 a month-7 times the amount of what she has been paying. Sara can’t afford this. We are hoping and praying for some type of intervention.
She was separated from her position as an RN at St. Joseph Hospital on May 31st, and was very disappointed and saddened at this news. She wants to eventually return to St. Joseph’s, but understands it will probably be in a different capacity.
Sara was chosen in February as a recipient for a charity with a non-profit called Pin-Ups for Charity. http://www.pinups4charityco.org/
She attended a bake sale event on May 21st and will be attending another event this Saturday, June 18th, in Erie, Colorado. Check out their Facebook page for details!!
They’re not only raising awareness for her and Susac Syndrome, but also raising money for another family struggling with a rare Auto-Immune disease as well.
As of today Sara has titrated down to 30 mg of Prednisone from the original 80 mg she started on in December, 6 months ago. She has agreed with her doctors to start a faster weekly taper. We are again trusting God for His favor in this decrease and also with her health care finances.
Thank you to everyone for your continued support and prayers for her.
I was diagnosed with Susac's in 2007. It took the doctors months to diagnose me. Johns Hopkins said it definitely was not susac's. But I went and saw an eye doctor at UVA and he had had patients with this and he was the one that finally diagnosed me. It ran it's course in about 5 years but in the mean time the vision and hearing have never recovered. The lesions are still on my brain and cause problems at times. I lost my peripheral vision and in 2010 the state of Pennsylvania pulled my drivers license for medical reasons. I constantly have ringing in my ears and low tones are very hard to hear. I have learned to watch people's lips as they speak and put what I see with what I do hear to make out what people are saying. By the way, I can see pretty good in front of me just not the sides or above or below. Sometimes I have problems with speech and thinking. I can be talking about something and then forget words, I can describe the word but can't remember the actual word itself. Frustrating! I became a recluse at first because with the vertigo being so bad I could not drive and then when I lost my license it was down hill from there. I ended up filing bankruptcy because the medical bills got too big, I was trying to work, but being sick and missing work and then loosing my drivers license, I was forced to apply for SSD. Then had to wait 2 years for Medicare to kick in. But now at 41 I have found someone that understands what it's like to be fine one minute and then to have your body turn on you the next. He supports me emotionally and is there for me. All I can say is, as family it will be tough but you must be there emotionally for your loved one. Advice: don't get upset when he/she can't hear you and you have to repeat yourself or they get flustered because they can't think of a word or finish the sentence they were just saying. Be there for them, if they have their drivers license taken away. Put yourself in their shoes. How would you feel if this was you? Thank you for your time and patience and reading my story and advice... This message is ment for all that read it. Just a little background from someone who has actually been and is still going through this the rest of my life, with the aftermath of the whatever happened to your loved one and myself.