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Disclaimer: The material presented in this site is intended for public educational purposes only. The author is not offering medical or legal advice. Accuracy of information is attempted but not guaranteed. Before undertaking any diet, or health improvement program, you should consult your physician. The author is in no way liable or responsible for any bodily harm, physical, mental or emotional state of any patient reacting to any of the content on this site. has not examined, reviewed or tested any product or service mentioned herein. We are not being paid to advertise or promote any product or service mentioned herein. The links are offered strictly as examples of resources available. The site assumes no responsibility or liability of any kind related to the content of external sites or the usage of any product or service referenced. Links to external sites were live at the time of creation of the link. does not create content for or manage external sites. The information can be changed or removed by the external site’s administrators at any time and they are responsible for the veracity of their information. Links are provided to support our data and supply additional resources. Please report broken links to is not a charitable foundation. It neither accepts nor distributes donations or funds of any kind.

The diagnosis of stiff-person syndrome can be frightening and disorienting.

Educating yourself and your loved ones is the first step toward easing that fear.

Some patients have loving supportive friends and family, others lack sufficient support systems. Either way, the important thing to remember is that you are your best advocate. By stocking your coping tool kit with the right tools and information, you can maintain control over your life.

Learn when, where, and how to ask for help.

This section covers multiple areas of concern and offers tools and resources to address them.

1. Self-care: evaluate your current status and recognize where you need assistance.

2. Activities of daily living: gather the right tools when you need them.

3. Home care: assess what you can do and when you need assistance.

4. Mobility: meet the challenges and choose the solutions.

5. Managing medications: tips and tools to avoid missed doses and overdoses, which can lead to crises.

6. Mental health: coping and effective communication are tools crucial to  managing your condition. Recognize when you are in trouble and learn how to ask for help and where to find it.

7. Emergency care: know the basics and share information with your support people and uninformed medical professionals.

8. Anesthesia concerns: anesthesiologists may not be aware of the special needs surrounding rare diseases. Educating yourself and providing the information to medical professionals may save your life.

9. Organizing information: the risk of memory issues and becoming incapacitated at some point necessitates that you, and your support team,  have important information and resources at your fingertips.

10. Financial aid: having a rare disease that requires long-term and often expensive treatments can lead to financial distress. You may become unable to perform your current job. Be proactive. Learn your rights and explore resources.

11. Legal matters: it is essential to keep your affairs in order and to make sure you have communicated your wants and needs to your support team.

12. Advice for family and friends:  whoever your support people are (family, friends, hired help, volunteer caregivers), they need tools too. Help them help you.

13. Patient stories:  find commiseration and inspiration from others struggling with the same rare disease.

The Tin Man does not endorse, contribute to, or support the content, participants, or individuals administering the sites. You should always consult a medical professional before following the advice of any individual or information found on any forum.

Be careful when posting personal information on public sites. Friends, family, coworkers, your insurance company, or physicians may also see what you post, even if you think your personal settings are designated “private.”

There are two main types of Facebook groups: open and closed. Open means the general public can see and respond with comments. They are usually moderated to keep the threads on topic. In closed groups, only members of the group can see and respond to the posts.

The Internet is full of predators. There have been cases of hacking where an individual assumes your photo and a version of your name for the purposes of conning people into divulging personal information and stealing money in the guise of charity, contests, or selling fraudulent treatments or cures. There are no miracle cures for stiff-person syndrome, but there are unscrupulous people selling fake cures, supplements, and treatments. Make certain you know who you are talking to, especially via direct message.

Never divulge personal financial information on the Internet or to anyone who contacts you via the Internet.

National Organization for Rare Diseases

Stiff Person Syndrome (Open Group)

SPS Matters (Closed Group)

SPS Action Network

SPS UK and Ireland

SPS UK and Ireland Support Group Website

SPS Moersch and Woltman (Closed Group)

SPS Support Group Brasil

Stiff Person Syndrome Strong Support Group

SPS: A Diary

Russia HSCT for MS and Autoimmune Diseases

HSCT Chicago (Closed Group)

Living Forward with SPS Personal Blog

INSPIRE  for rare diseases (Website)

Stiff Person Syndrome Network (Website)




National Rehabilitation Information Center

Find agencies, organizations, and online resources for treatment, benefits, and services.

Easter Seals

Resources include where to find in-home assistance and how to address aging challenges and building a relationship with your doctor.  They offer access to research about what it’s like to live with a disability.

National Organization on Disability

Researches, develops, and demonstrates creative approaches to disability employment issues.

Friends of Disabled Adults and Children

With a strong network of volunteers and partners, FODAC provides refurbished equipment and services for disabled adults and children to improve their overall quality of life.

Living with SPS  Self Care   Grooming   Dressing   Bedroom Safety   Housebound/Bedridden   

Kitchen,Cooking & Groceries  Home Care  Hiring a Service   In-Home Care   Exercise   Mobility   Driving

Managing Medications  SPS & Pregnancy   Organizing Information   Financial Aid   Legal Aid   Mental Health

Anxiety & Depression   Suicide Prevention   Relationship Health   Risk of Abuse   Venting   Caregiving

Emergency Care   Anesthesia

Disabled and Alone

A non-profit organization established to help families provide a secure future for their loved ones with a disability.

New Horizons Unlimited

Grassroots, non-profit organization, that supports positive personal journeys for our community members with disabilities, their families and caregivers. Nationally, we provide information and referral via our website, our Facebook Page, and e-mail. Locally we provide one-on-one mentoring and training, ongoing support and consultation, personalized information and referral, and grants of refurbished Windows computers for home use.

Whole Life Services

Dedicated to providing quality support to people with disabilities and their families. We provide support in community-integrated settings, in their homes, and in non-traditional facility- based services.

American Association of People with Disabilities

Education, employment, housing, transportation.

Eurodis Rare disease organization for Europe.