Living With Superficial Siderosis

Living With Superficial Siderosis livingwithss.com is the digital publication of the Superficial Siderosis Research Alliance for learning about superficial siderosis. The SSRA is a 501(c)(3) nonprofit whose mission is advocacy, education, and fundraising for medical research.
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SSRA is a 501(c)(3) nonprofit whose mission is to raise funding for research benefiting the superficial siderosis community.

Operating as usual

Inescapable Realities
08/19/2021
Inescapable Realities

Inescapable Realities

Superficial siderosis progresses slowly during the early years. This may be an unintended blessing considering the years many will spend searching for a diagnosis. Gary’s story timeline has always remained closely aligned with physician... #chelationresearch #chronicillnessdangers #symptomseffects

08/17/2021

Caden’s had a long day. They’ve moved him to two different icu rooms in the last 24 hours (because of their increase in covid cases)

He is off all muscle relaxers to help prepare neurosurgery for his trial of medicine into his spinal cord cavity so his pain has been a little rough. He keeps having bad spasms.

His left pupil is still dilated with a bad abrasion to his eye. Orthopedic surgery seen him yesterday because his legs wouldn’t bend while sedated which means his joints/bones are permanatley deformed from his prolonged dystonia (muscle stiffness). 😕

On a positive note, Caden has had some visits from some of his favorite people (Uncle Jerm, Tina, Uncle Alt-Alt, and Grandpa) and of course that always means new toys! 💙

#superficialsiderosis
#braintumorawareness #ssra
#raredisease Living With Superficial Siderosis

Discussing the importance of the Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670. "The STAT Act is a biparti...
07/20/2021

Discussing the importance of the Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670. "The STAT Act is a bipartisan bill created with the input of the rare disease community to improve the development of and access to therapies for the rare disease community.
Disease community. #raredc2021 #superficalsiderosis

Superficial Siderosis Symptoms
07/19/2021
Superficial Siderosis Symptoms

Superficial Siderosis Symptoms

A reference resource offering a brief description of recognized or associated symptoms of superficial siderosis of the central nervous system. #superficialsiderosissymptoms #symtoms

Check out our newest design "FIGHT FOR A CAUSE"  July 4-8th onlySpecial Discounted Price on Men's T-shirt $12 or 20% off...
07/03/2021

Check out our newest design "FIGHT FOR A CAUSE" July 4-8th only
Special Discounted Price on Men's T-shirt $12 or 20% off every item in the SSRA Gear Shop
https://livingwithss.com/dir/official-ssra-gear/#!/fight+alone?idea=60e078e5b4c9e110644201b2

Check out our newest design "FIGHT FOR A CAUSE" July 4-8th only
Special Discounted Price on Men's T-shirt $12 or 20% off every item in the SSRA Gear Shop
https://livingwithss.com/dir/official-ssra-gear/#!/fight+alone?idea=60e078e5b4c9e110644201b2

07/02/2021

Calling students interested in #STEM #neuroscience #Neurology!!
The Mass General Neurology Youth Neurology Education and Research Program is excited to announce the return of the #INSPIRE Speaker Series beginning July 12!
Sign up: https://tinyurl.com/2pxr9y5h

#nevergiveup
07/01/2021
Hasan Banks on TikTok

#nevergiveup

My ataxia will not define me. I will be the best I can be #gymmotivation #ataxia #noexcuseschallenge

06/28/2021
06/26/2021

The SSRA has extraordinary business supporters throughout Wisconsin and all the way to Texas. Printing services, SSRA wristbands, event items, time, services, or direct donation. We appreciate those who recognize the importance of giving back. Thank you!

06/26/2021

The SSRA has extraordinary business supporters throughout Wisconsin and all the way to Texas. Printing services, SSRA wristbands, event items, time, services, or direct donation. We appreciate those who recognize the importance of giving back. Thank you!

06/25/2021

Make It Happen
#igniteSSRA

#superficialsiderosis
#superficialsiderosisresearchalliance

When my husband Ron was 10, he was diagnosed with an ependymoma brain tumor, of which only 40% of children survived. His...
06/23/2021

When my husband Ron was 10, he was diagnosed with an ependymoma brain tumor, of which only 40% of children survived. His Aunt Maria worked for a surgeon who agreed to the operation. Regrettably, his doctor removed all but a small section because of how it was wrapped around his brain stem. Still, a miracle story.

After going through a course of radiation, he developed hydrocephalus when he was 15, requiring shunts to be implanted. Unfortunately, his tumor returned 27 years later, and his shunts had to be removed due to infection.

Ron was able to go back to work, but his balance deteriorated over the next four years. His physician rejected the idea it was hydrocephalus-I think he was afraid to go back in, but he did implant new shunts. Unfortunately, his brainstem was now so bent his doctors felt Ron would never walk unassisted.

Within months he experienced two small TIAs. Next, his eyesight was beginning to get blurry on and off. I took him to top specialists and Wills Eye Hospital in Philadelphia, but no one could give us an answer. Finally, an MRI listed the possibility of Superficial Siderosis. We consulted Dr. Michael Levy in 2014, who felt Ron had Superficial Siderosis present for at least ten to twenty years. Ron began chelation therapy with deferiprone.

Ron is blind now but can sometimes detect movement. He sleeps more but fortunately still has some hearing in one ear. In a wheelchair, he is beginning to forget a little and is sometimes confused. But still has a great attitude.

When my husband Ron was 10, he was diagnosed with an ependymoma brain tumor, of which only 40% of children survived. His Aunt Maria worked for a surgeon who agreed to the operation. Regrettably, his doctor removed all but a small section because of how it was wrapped around his brain stem. Still, a miracle story.

After going through a course of radiation, he developed hydrocephalus when he was 15, requiring shunts to be implanted. Unfortunately, his tumor returned 27 years later, and his shunts had to be removed due to infection.

Ron was able to go back to work, but his balance deteriorated over the next four years. His physician rejected the idea it was hydrocephalus-I think he was afraid to go back in, but he did implant new shunts. Unfortunately, his brainstem was now so bent his doctors felt Ron would never walk unassisted.

Within months he experienced two small TIAs. Next, his eyesight was beginning to get blurry on and off. I took him to top specialists and Wills Eye Hospital in Philadelphia, but no one could give us an answer. Finally, an MRI listed the possibility of Superficial Siderosis. We consulted Dr. Michael Levy in 2014, who felt Ron had Superficial Siderosis present for at least ten to twenty years. Ron began chelation therapy with deferiprone.

Ron is blind now but can sometimes detect movement. He sleeps more but fortunately still has some hearing in one ear. In a wheelchair, he is beginning to forget a little and is sometimes confused. But still has a great attitude.

06/23/2021
06/22/2021
06/21/2021
My name is Julianne. I am 64 years old and live in Devonport, a city in northern Tasmania. Tasmania is a large island st...
06/20/2021
Julianne’s Story

My name is Julianne. I am 64 years old and live in Devonport, a city in northern Tasmania. Tasmania is a large island state located 240 km (150 mi) south of the Australian mainland. I was diagnosed with Superficial Siderosis in September 2011, so nearly ten years! In...

My name is Julianne. I am 64 years old and live in Devonport, a city in northern Tasmania. Tasmania is a large island state located 240 km (150 mi) south of the Australian mainland. I was diagnosed with Superficial Siderosis in September 2011, so nearly ten years! In... #activebleed #diagnosis #MRI

We showed you ours....now show us yoursYour story matters. livingwithss.com is looking for guest contributors. No experi...
06/16/2021

We showed you ours..
..now show us yours

Your story matters. livingwithss.com is looking for guest contributors. No experience necessary. Contact us today.

We showed you ours..
..now show us yours

Your story matters. livingwithss.com is looking for guest contributors. No experience necessary. Contact us today.

The new 2021 Superficial Siderosis Brochure is here! Bundles are available for the US and Canada. The UK and Australian ...
06/16/2021

The new 2021 Superficial Siderosis Brochure is here! Bundles are available for the US and Canada. The UK and Australian editions are coming soon.

The new 2021 Superficial Siderosis Brochure is here! Bundles are available for the US and Canada. The UK and Australian editions are coming soon.

A must-read if you have an unrepaired active bleed
06/13/2021
The Hazard of Blood Thinners

A must-read if you have an unrepaired active bleed

Suppose you have an identified or suspected active bleed. In that case, your doctors need to be aware of the hazard blood thinners pose to your hemosiderin layer. Your body may have taken years to form the coating you have now. Still, if you require an... #activebleed #bloodthinners #duralrepair

Knocking Out The Brain Zaps
06/11/2021
Knocking Out The Brain Zaps

Knocking Out The Brain Zaps

It had been tough for me to tell if the first course of nerve blockers (Greater Occipital Nerve Block) worked now that a few weeks had gone by. I kept quite an extensive log of the ‘brain zaps’; however, my general prognosis was that... #brainzaps #GreaterOccipitalNerveBlock #Headache #nervebloc...

Sometimes You Need A Win For Team Chelation
06/11/2021
Sometimes You Need A Win For Team Chelation

Sometimes You Need A Win For Team Chelation

I was diagnosed with Superficial siderosis in 2015, but it was late 2017 before I finally found a neurologist who was willing to listen and help me in any way he could.  He agreed deferiprone (Ferriprox) was the only treatment available, and although not tolerated... #chelationtherapy #Hemosiderin

IT’S SUPERFICIAL SIDEROSIS PATIENT REGISTRY FRIDAY!! Patient powered rare disorder registries empowers every rare diseas...
06/11/2021

IT’S SUPERFICIAL SIDEROSIS PATIENT REGISTRY FRIDAY!! Patient powered rare disorder registries empowers every rare disease community to be proactive. This is your Friday registry reminder to sign up and take part. If your disease doesn’t have a patient registry you can work towards creating one. We did! You can contact us on how we started ours or contact @nord_rare. They have resources to share. #patientregistries #superficialsiderosis #rarediseaseawareness #rarediseaseresearch

IT’S SUPERFICIAL SIDEROSIS PATIENT REGISTRY FRIDAY!! Patient powered rare disorder registries empowers every rare disease community to be proactive. This is your Friday registry reminder to sign up and take part. If your disease doesn’t have a patient registry you can work towards creating one. We did! You can contact us on how we started ours or contact @nord_rare. They have resources to share. #patientregistries #superficialsiderosis #rarediseaseawareness #rarediseaseresearch

The SSRA is recruiting volunteers. This may not be your chance to be one of the cool kids but it is your chance to stand...
06/08/2021

The SSRA is recruiting volunteers. This may not be your chance to be one of the cool kids but it is your chance to stand out from the crowd! #igniteSSRA #MakeItHappen #joinus #superficialsiderosisresearchalliance

The SSRA is recruiting volunteers. This may not be your chance to be one of the cool kids but it is your chance to stand out from the crowd! #igniteSSRA #MakeItHappen #joinus #superficialsiderosisresearchalliance

Rare Leader: Kyle Dempsey, President, Superficial Siderosis Research Alliance - Global Genes
06/07/2021
Rare Leader: Kyle Dempsey, President, Superficial Siderosis Research Alliance - Global Genes

Rare Leader: Kyle Dempsey, President, Superficial Siderosis Research Alliance - Global Genes

The BasicsName: Kyle Dempsey Title: President Organization: Superficial Siderosis Research Alliance Social Media Links: Disease focus: Superficial siderosis is a slowly progressive chronic neurodegenerative condition due to iron toxicity from persistent subarachnoid bleeding. The human body has a li...

Are you looking for answers?  #superficialsiderosis  #superficialsiderosisresearchalliance
06/07/2021

Are you looking for answers? #superficialsiderosis #superficialsiderosisresearchalliance

Are you looking for answers? #superficialsiderosis #superficialsiderosisresearchalliance

06/07/2021
The STAT Act would create a rare disease institute within the FDA tasked with developing streamlined ideas about the rev...
06/07/2021
Support Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670 (STAT ACT)

The STAT Act would create a rare disease institute within the FDA tasked with developing streamlined ideas about the review process of therapies for rare diseases, execute policy enhancement and direct condition-specific regulatory science initiatives. A new FDA advisory committee would be established to identify barriers to treatment development and access and a program addressing ultra-rare diseases named LATITUDE.

The LATITUDE program would award grants to aid in developing therapies for conditions impacting very small numbers of people. It also aims to improve coverage of treatments by insurance companies and other payers.

To contact your Members of Congressand ask them to co-sponsor the Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670, complete the fields in the message box compliments of the EveryLife Foundation. Follow our link to send a direct message or give them a call. Personalize your message to let...

Download your copy of the newly published report from the Superficial Siderosis Patient Registry. Learn the latest SS pa...
06/06/2021

Download your copy of the newly published report from the Superficial Siderosis Patient Registry. Learn the latest SS patient statistics, 2021-2021 research funding outlook, and why the patient voice matters. Visit ssra.livingwithss.com to find a copy today.

Download your copy of the newly published report from the Superficial Siderosis Patient Registry. Learn the latest SS patient statistics, 2021-2021 research funding outlook, and why the patient voice matters. Visit ssra.livingwithss.com to find a copy today.

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Superficial Siderosis Fact Sheet

Superficial siderosis is a slowly progressive chronic neurodegenerative condition due to iron toxicity from persistent subarachnoid bleeding. The human body has a limited capacity to rid itself of blood products in the subarachnoid space, but in ultra-rare cases, chronic or intermittent bleeding over the years to decades eventually leads to overwhelming amounts of toxic free-iron molecules.

These toxic free-iron molecules are curbed by a protein called ferritin which together forms a layer of hemosiderin around the brain, brain stem, spinal cord, and optic nerves. Long-term exposure is toxic to the tissue underneath resulting in hearing loss, imbalance, dizziness, weakness, numbness and bowel/bladder dysfunction. Although easily identified by ​magnetic resonance imaging ​(MRI), superficial siderosis is often confused for other progressive neurological conditions such as multiple sclerosis, Parkinson’s, or multiple system atrophy.


  • Due to the severe nature of the disease, in 2018 the Social Security Administration added superficial siderosis to the Compassionate Allowance list of conditions that allows for the fast-tracking of disability claims.

  • Infratentorial ​superficial siderosis ​classic symptoms are ataxia, sensorineural hearing loss, and myelopathy​. An estimated 95% of patients will experience hearing loss.
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    Comments

    I have been on Ferriprox for about 3 years now. My body has taken it well. The only lab that has been chronically out of normal range is my Eosinophil level. For about 2 years it has been at zero. The rest of my white blood cell counts have stayed within range. Dr. Levy is not concerned about my Eosinophil count. Within the past year my zinc levels have slightly dipped below the normal range a handful of times. Dr. Levy had me start to supplement with zinc. For the most part that has kept my zinc levels in range. Have any of you on Deferiprone experienced a drop in your zinc levels?
    Please all SS patients can you go to Janice Toovey 's Post on The Silent Bleed regarding her survey of sufferers and leave your name & area you live. This is crucial as Prof Werring of London is loosing his clinical nurse due to funding. We need to lobby MP's to help us all here in the UK. For the government don't think our condition is worth funding. We need your help and support.
    I had a tele-visit with Dr. Levy this afternoon to review my most recent MRI. I've been taking Ferriprox for approximately 8 years. Last few MRI's were poor quality due to not being able to stay still because of back problems. This last MRI was a good Image. Dr. Levy informed me that virtual all of the iron deposits on my cerebellum are gone. I still need to continue the Ferriprox due to SS in the spinal column, but I have to tell you I am so relieved to know it's working. Thank you Dr. Levy.
    hey my fellow SS friends I could use some big time prayers. My cancer has returned and the oral chemo is not working..scared beyond belief
    Thank you guys! You rock! I got this top today it fits awesome! I love it @LivingwithSS ps I’m not very good at selfie’s!! Love the top! #superficialSiderosis
    I had a disturbing conversation with a pharmacist at Eversana, the US distributer of Ferriprox yesterday. I called because I’ve been hit with texts about the benefit of switching from 500 mg tablets to the 1000mg tabs. Literature and the website sent says that dosage should be 75-99mg/kg/day. This is a much higher dosage then most of us are on at 2000-2500 mg/day. She explained that this dosage is fore people getting weekly blood transfusion and not SS. It seems the 1000 mg tabs are a new formulation which will keep the 1000mg tabs under patent, so the manufacture can be the sole manufacture of Ferriprox. I inquired as to when the 500mg tabs would be generic, she informed me that she does not know as Eversana will not be distributing it when it is available for generic manufacturing. She said the current manufacture of Ferriprox has no plans to manufacture the generic. Is anyone aware when in 2021 Ferriprox will be generic and if there is a drug company out there who plans on offering the generic? How do we find out if there will be an available generic in the US?
    Has anyone had any problems after getting a flu shot while on Ferriprox? Any advise welcomed!
    This weekend only - until midnight Sunday 20th September - MyGivingCircle will donate $1 for every new person that votes for the Superficial Siderosis Research Alliance at https://mygivingcircle.org/charity/superficial-siderosis-research-alliance/ Your vote could help us share in $45,000 of grants on September 30th but this weekend only MyGivingCircle will also donate $1 for each new person that votes. 200 new voters = $200 for the SUPERFICIAL SIDEROSIS RESEARCH ALLIANCE ! If you haven't voted for us before, please take a moment to vote at https://mygivingcircle.org/charity/superficial-siderosis-research-alliance/ and make sure you nominate us as your favorite Charity. If you have voted for us, please share this post so we can get as many new votes as possible at https://mygivingcircle.org/charity/superficial-siderosis-research-alliance/
    Wish me luck tomorrow I will have my first Zoom Dr. appt. with Dr. from Mayo.
    Since having been diagnosed December 2019, my first appointment with a neurologist is coming up. I have no idea if the doctor knows much about Superficial Siderosis but I guess it’s a start. There was a post here a while back that suggests information about this disease to take to the appointment..can anyone help me out? I am trying to get into Mayo 🙏🙏
    I tried to put a comment on the Understanding Ferriprox article: The comment was rejected with the comment: "Were sorry you are not allowed to proceed. Your request looks suspicious similar to a automated requests from spam posting software......... If you believe..... let us know RI: YZIWRETK6FHUXOXCN12TED7L