Another Days Journey in the Battle of a Sarcoidosis Warrior…

#MarilynsFightForLifeKICKSarcoidosisCampaign #Fighting4ACure #LivingWithChronicPain #LivingWithAnInvisibleIllness #SARCOIDOSISAWARENESS #SarcoidosisWarrior #RareDisease #SupportSarcoidosisResearch #ASongForLife #FoundationforSarcoidosisResearch #FIBROMYALGIA

RARE DISEASE DAY 2/28/2018

Rare Disease Report

NORD: The Voice of the Community – February 2018

FEBRUARY 20, 2018

News from NORD and its Member Organizations – February 2018

Find Out What’s Happening in Your State for Rare Disease Day
On February 28th, people around the world will observe Rare Disease Day. To find out what’s happening around the U.S. and in your state, visit the national website hosted by NORD. Events are planned in state legislative buildings in more than 30 states to promote awareness of issues. In addition, special events are taking place on many university campuses and in schools and hospitals. Post your event here and read a state-by-state overview.

Join NORD in Rare Disease Day Tweetchat
You are invited to a tweetchat on Rare Disease Day (Feb. 28th) hosted by NORD, The Mighty and Boston Children’s Hospital to discuss “What to do if You or Your Child Receive a Rare Disease Diagnosis.” Use hashtag #RDD18Chat. The chat runs from 1 to 2 pm ET. NORD will be live-tweeting from @RareDiseases. Co-hosts will be @TheMightySite and @BostonChildrens. Special guests will include Marsha Lanes MS, CGC, Genetic Counselor and Medical Editor on the NORD staff; Phillip L. Pearl MD, Director of Epilepsy and Clinical Neurophysiology at Boston Children’s and Ashanthi De Silva, Rare Disease Editor for The Mighty.

NORD to Partner Again with The Hole in the Wall Gang Camp
Applications are available for a rare disease summer family camp in Connecticut on which NORD is partnering again this year with The Hole in the Wall Gang Camp. The camp provides a special opportunity for children and families affected by rare diseases to join together for a weekend of pure fun, free of charge. Family Camp is open to 25 families who are located in the Northeast. It will take place May 31-June 3 in Ashford CT.  Apply here.

Letter to Congress: NORD & Others Oppose “Right to Try”
NORD and 40 other patient organizations and professional societies have sent a letter to the leadership of the U.S. House of Representatives explaining why they oppose “Right to Try” legislation currently being considered by Congress. Signers of the letter include the American Society of Clinical Oncology, Leukemia & Lymphoma Society, American Lung Association and National Health Council. The organizations say they support patients being given access to unapproved therapies but believe the bills under consideration won’t increase patient access.

“The Ataxian” Documentary to be Available to Public for Download
A documentary film featuring the cross-country bike ride of two young men living with Friedreich’s ataxia, “The Ataxian”, will be screened in Washington DC as part of the Rare Disease Day activities. In addition, it will be available to the public beginning Feb. 26. Kyle Bryant and Sean Baumstark and their team’s legendary bike ride across America are featured in the film. Beginning Feb. 26th, the film will be available on iTunes and other download sites.

NORD Advocates for Iowa Co-pay Choice Bill
NORD has been advocating for the Iowa Co-pay Choice Bill (SSB 3004). This legislation would help with rising out-of-pocket costs. Specifically, SSB 3004 gives choice and co-pay predictability to Iowa families by requiring that insurance providers offer a minimum number of plans that provide a traditional co-pay option, as opposed to co-insurance. NORD will continue to advocate for this legislation throughout February.

NORD Submits Comments to the Centers for Medicare and Medicaid Services
NORD has been, and will continue to be, engaged in a number of activities to protect access to quality healthcare coverage for Medicaid beneficiaries. Most recently, NORD has submitted comments to the Centers for Medicare and Medicaid Services (CMS) regarding Kansas’ effort to implement work requirementsla and a lifetime limit in its Medicaid program. Read the comments.

NEWS FROM NORD MEMBER ORGANIZATIONS
Alagille Syndrome Alliance Offers Scholarship for Students With Alagille Syndrome
The ALGSA is again offering the Alaina Kaitlyn Hahn Celebratory Scholarship for students with Alagille syndrome. Applications are being accepted now. The scholarship funds the education of high school graduates or GED credential recipients with ALGS who are enrolled in or entering an accredited U.S. university, college or vocational school and choose to pursue higher education in the human biological, medical or health sciences. Write to alagille[@]alagille[.]org and include AKH Scholarship in the subject line to request application materials.

Abstracts Being Accepted for Cornelia de Lange Syndrome Foundation Symposium
Abstracts are currently being acceptedfor the Cornelia de Lange Syndrome Foundation’s 8th Biennial Scientific and Education Symposium. The meeting will take place June 27-28 in Minneapolis. Attendees include physicians in various clinical disciplines, genetic counselors and research scientists.  The meeting encourages interactions between basic and clinical scientists.

Alpha-1 Foundation Awards John Walsh Translational Research Award
The John W. Walsh Translational Research Award has been granted to Joseph Kaserman MD, instructor of medicine at Boston University School of Medicine and a physician in Pulmonary, Allergy, Sleep and Critical Care Medicine at Boston Medical Center. The award was established in memory of John Walsh, co-founder of the foundation who dedicated his life to seeking a cure for alpha-1 antitrypsin deficiency. More.

Opioid Epidemic Impacts Patients With Sarcoidosis
The Foundation for Sarcoidosis Research has issued a press release about a survey on chronic pain, neuropathy and medications for sarcoidosis patients. The survey provides information related to chronic pain experienced by those living with sarcoidosis and the opioid epidemic. Read the press release.

National Tissue Biobank Established for Coats Disease
The Jack McGovern Coats’ Disease Foundation has established a national tissue biobank at the Wilmer Eye Institute of Johns Hopkins Medicine to facilitate research on the causes of, and most effective treatments for, Coats’ disease. This rare disorder affects the retina and has been diagnosed in children as young as four months. More. 

MDS Foundation Hosts Family/Caregiver Forums
The MDS Foundation hosts forums at locations around the U.S. for newly diagnosed patients, long-term survivors or caregivers affected by myelodysplastic syndromes. Medical experts present information on treatment options and strategies for living with MDS. View the dates and locations.

One-Day Conference Planned on Effects of Necrotizing Enterocolitis on Premature Infants and Families
The Morgan Leary Vaughn Fund Inc. is hosting a one-day regional conference in Cromwell CT on June 11 on reducing the devastating effects of necrotizing enterocolitis on premature infants and their families. Online registration is open now for “Speaking of NEC: Unplugged.”

Osteogenesis Imperfecta Foundation Plans Conference
July 13-15 will be the dates of the biennial conference of the Osteogenesis Imperfecta Foundation. To take place in Baltimore, the program will feature forums with leading experts, practical living advice and research.

Progeria Research Foundation Scientific Workshop Planned
The 9th International Scientific Workshop of the Progeria Research Foundation will take place September 20-22 in Cambridge MA. This event promotes collaboration among basic and clinical scientists toward progress in progeria, cardiovascular disease and aging research. Information and registration.

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Rare Disease Report

NORD: The Voice of the Community – February 2018

FEBRUARY 20, 2018

News from NORD and its Member Organizations – February 2018

Find Out What’s Happening in Your State for Rare Disease Day
On February 28th, people around the world will observe Rare Disease Day. To find out what’s happening around the U.S. and in your state, visit the national website hosted by NORD. Events are planned in state legislative buildings in more than 30 states to promote awareness of issues. In addition, special events are taking place on many university campuses and in schools and hospitals. Post your event here and read a state-by-state overview.

Join NORD in Rare Disease Day Tweetchat
You are invited to a tweetchat on Rare Disease Day (Feb. 28th) hosted by NORD, The Mighty and Boston Children’s Hospital to discuss “What to do if You or Your Child Receive a Rare Disease Diagnosis.” Use hashtag #RDD18Chat. The chat runs from 1 to 2 pm ET. NORD will be live-tweeting from @RareDiseases. Co-hosts will be @TheMightySite and @BostonChildrens. Special guests will include Marsha Lanes MS, CGC, Genetic Counselor and Medical Editor on the NORD staff; Phillip L. Pearl MD, Director of Epilepsy and Clinical Neurophysiology at Boston Children’s and Ashanthi De Silva, Rare Disease Editor for The Mighty.

NORD to Partner Again with The Hole in the Wall Gang Camp
Applications are available for a rare disease summer family camp in Connecticut on which NORD is partnering again this year with The Hole in the Wall Gang Camp. The camp provides a special opportunity for children and families affected by rare diseases to join together for a weekend of pure fun, free of charge. Family Camp is open to 25 families who are located in the Northeast. It will take place May 31-June 3 in Ashford CT.  Apply here.

Letter to Congress: NORD & Others Oppose “Right to Try”
NORD and 40 other patient organizations and professional societies have sent a letter to the leadership of the U.S. House of Representatives explaining why they oppose “Right to Try” legislation currently being considered by Congress. Signers of the letter include the American Society of Clinical Oncology, Leukemia & Lymphoma Society, American Lung Association and National Health Council. The organizations say they support patients being given access to unapproved therapies but believe the bills under consideration won’t increase patient access.

“The Ataxian” Documentary to be Available to Public for Download
A documentary film featuring the cross-country bike ride of two young men living with Friedreich’s ataxia, “The Ataxian”, will be screened in Washington DC as part of the Rare Disease Day activities. In addition, it will be available to the public beginning Feb. 26. Kyle Bryant and Sean Baumstark and their team’s legendary bike ride across America are featured in the film. Beginning Feb. 26th, the film will be available on iTunes and other download sites.

NORD Advocates for Iowa Co-pay Choice Bill
NORD has been advocating for the Iowa Co-pay Choice Bill (SSB 3004). This legislation would help with rising out-of-pocket costs. Specifically, SSB 3004 gives choice and co-pay predictability to Iowa families by requiring that insurance providers offer a minimum number of plans that provide a traditional co-pay option, as opposed to co-insurance. NORD will continue to advocate for this legislation throughout February.

NORD Submits Comments to the Centers for Medicare and Medicaid Services
NORD has been, and will continue to be, engaged in a number of activities to protect access to quality healthcare coverage for Medicaid beneficiaries. Most recently, NORD has submitted comments to the Centers for Medicare and Medicaid Services (CMS) regarding Kansas’ effort to implement work requirementsla and a lifetime limit in its Medicaid program. Read the comments.

NEWS FROM NORD MEMBER ORGANIZATIONS
Alagille Syndrome Alliance Offers Scholarship for Students With Alagille Syndrome
The ALGSA is again offering the Alaina Kaitlyn Hahn Celebratory Scholarship for students with Alagille syndrome. Applications are being accepted now. The scholarship funds the education of high school graduates or GED credential recipients with ALGS who are enrolled in or entering an accredited U.S. university, college or vocational school and choose to pursue higher education in the human biological, medical or health sciences. Write to alagille[@]alagille[.]org and include AKH Scholarship in the subject line to request application materials.

Abstracts Being Accepted for Cornelia de Lange Syndrome Foundation Symposium
Abstracts are currently being accepted for the Cornelia de Lange Syndrome Foundation’s 8th Biennial Scientific and Education Symposium. The meeting will take place June 27-28 in Minneapolis. Attendees include physicians in various clinical disciplines, genetic counselors and research scientists.  The meeting encourages interactions between basic and clinical scientists.

Alpha-1 Foundation Awards John Walsh Translational Research Award
The John W. Walsh Translational Research Award has been granted to Joseph Kaserman MD, instructor of medicine at Boston University School of Medicine and a physician in Pulmonary, Allergy, Sleep and Critical Care Medicine at Boston Medical Center. The award was established in memory of John Walsh, co-founder of the foundation who dedicated his life to seeking a cure for alpha-1 antitrypsin deficiency. More.

Opioid Epidemic Impacts Patients With Sarcoidosis
The Foundation for Sarcoidosis Research has issued a press release about a survey on chronic pain, neuropathy and medications for sarcoidosis patients. The survey provides information related to chronic pain experienced by those living with sarcoidosis and the opioid epidemic. Read the press release.

National Tissue Biobank Established for Coats Disease
The Jack McGovern Coats’ Disease Foundation has established a national tissue biobank at the Wilmer Eye Institute of Johns Hopkins Medicine to facilitate research on the causes of, and most effective treatments for, Coats’ disease. This rare disorder affects the retina and has been diagnosed in children as young as four months. More. 

MDS Foundation Hosts Family/Caregiver Forums
The MDS Foundation hosts forums at locations around the U.S. for newly diagnosed patients, long-term survivors or caregivers affected by myelodysplastic syndromes. Medical experts present information on treatment options and strategies for living with MDS. View the dates and locations.

One-Day Conference Planned on Effects of Necrotizing Enterocolitis on Premature Infants and Families
The Morgan Leary Vaughn Fund Inc. is hosting a one-day regional conference in Cromwell CT on June 11 on reducing the devastating effects of necrotizing enterocolitis on premature infants and their families. Online registration is open now for “Speaking of NEC: Unplugged.”

Osteogenesis Imperfecta Foundation Plans Conference
July 13-15 will be the dates of the biennial conference of the Osteogenesis Imperfecta Foundation. To take place in Baltimore, the program will feature forums with leading experts, practical living advice and research.

Progeria Research Foundation Scientific Workshop Planned
The 9th International Scientific Workshop of the Progeria Research Foundation will take place September 20-22 in Cambridge MA. This event promotes collaboration among basic and clinical scientists toward progress in progeria, cardiovascular disease and aging research. Information and registration.

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NORD: The Voice of the Community – February 2018 FEBRUARY 20, 2018 News from NORD and its Member Organizations – February 2018 Find Out What’s Happening in Your State for Rare Disease Day On February 28th, people around the world will observe Rare Disease Day. To find out what’s happening around the U.S. and in your state, visit the national website hosted by NORD. Events are planned in state legislative buildings in more than 30 states to promote awareness of issues. In addition, special events are taking place on many university campuses and in schools and hospitals. Post your event here and read a state-by-state overview.  Join NORD in Rare Disease Day Tweetchat You are invited to a tweetchat on Rare Disease Day (Feb. 28th) hosted by NORD, The Mighty and Boston Children’s Hospital to discuss “What to do if You or Your Child Receive a Rare Disease Diagnosis.” Use hashtag #RDD18Chat. The chat runs from 1 to 2 pm ET. NORD will be live-tweeting from @RareDiseases. Co-hosts will be @TheMightySite and @BostonChildrens. Special guests will include Marsha Lanes MS, CGC, Genetic Counselor and Medical Editor on the NORD staff; Phillip L. Pearl MD, Director of Epilepsy and Clinical Neurophysiology at Boston Children’s and Ashanthi De Silva, Rare Disease Editor for The Mighty. NORD to Partner Again with The Hole in the Wall Gang Camp Applications are available for a rare disease summer family camp in Connecticut on which NORD is partnering again this year with The Hole in the Wall Gang Camp. The camp provides a special opportunity for children and families affected by rare diseases to join together for a weekend of pure fun, free of charge. Family Camp is open to 25 families who are located in the Northeast. It will take place May 31-June 3 in Ashford CT.  Apply here. Letter to Congress: NORD & Others Oppose “Right to Try” NORD and 40 other patient organizations and professional societies have sent a letter to the leadership of the U.S. House of Representatives explaining why they oppose “Right to Try” legislation currently being considered by Congress. Signers of the letter include the American Society of Clinical Oncology, Leukemia & Lymphoma Society, American Lung Association and National Health Council. The organizations say they support patients being given access to unapproved therapies but believe the bills under consideration won’t increase patient access. “The Ataxian” Documentary to be Available to Public for Download A documentary film featuring the cross-country bike ride of two young men living with Friedreich’s ataxia, “The Ataxian”, will be screened in Washington DC as part of the Rare Disease Day activities. In addition, it will be available to the public beginning Feb. 26. Kyle Bryant and Sean Baumstark and their team’s legendary bike ride across America are featured in the film. Beginning Feb. 26th, the film will be available on iTunes and other download sites. NORD Advocates for Iowa Co-pay Choice Bill NORD has been advocating for the Iowa Co-pay Choice Bill (SSB 3004). This legislation would help with rising out-of-pocket costs. Specifically, SSB 3004 gives choice and co-pay predictability to Iowa families by requiring that insurance providers offer a minimum number of plans that provide a traditional co-pay option, as opposed to co-insurance. NORD will continue to advocate for this legislation throughout February.  NORD Submits Comments to the Centers for Medicare and Medicaid Services NORD has been, and will continue to be, engaged in a number of activities to protect access to quality healthcare coverage for Medicaid beneficiaries. Most recently, NORD has submitted comments to the Centers for Medicare and Medicaid Services (CMS) regarding Kansas’ effort to implement work requirementsla and a lifetime limit in its Medicaid program. Read the comments. NEWS FROM NORD MEMBER ORGANIZATIONS Alagille Syndrome Alliance Offers Scholarship for Students With Alagille Syndrome The ALGSA is again offering the Alaina Kaitlyn Hahn Celebratory Scholarship for students with Alagille syndrome. Applications are being accepted now. The scholarship funds the education of high school graduates or GED credential recipients with ALGS who are enrolled in or entering an accredited U.S. university, college or vocational school and choose to pursue higher education in the human biological, medical or health sciences. Write to alagille[@]alagille[.]org and include AKH Scholarship in the subject line to request application materials. Abstracts Being Accepted for Cornelia de Lange Syndrome Foundation Symposium Abstracts are currently being accepted for the Cornelia de Lange Syndrome Foundation’s 8th Biennial Scientific and Education Symposium. The meeting will take place June 27-28 in Minneapolis. Attendees include physicians in various clinical disciplines, genetic counselors and research scientists.  The meeting encourages interactions between basic and clinical scientists. Alpha-1 Foundation Awards John Walsh Translational Research Award The John W. Walsh Translational Research Award has been granted to Joseph Kaserman MD, instructor of medicine at Boston University School of Medicine and a physician in Pulmonary, Allergy, Sleep and Critical Care Medicine at Boston Medical Center. The award was established in memory of John Walsh, co-founder of the foundation who dedicated his life to seeking a cure for alpha-1 antitrypsin deficiency. More. Opioid Epidemic Impacts Patients With Sarcoidosis The Foundation for Sarcoidosis Research has issued a press release about a survey on chronic pain, neuropathy and medications for sarcoidosis patients. The survey provides information related to chronic pain experienced by those living with sarcoidosis and the opioid epidemic. Read the press release. National Tissue Biobank Established for Coats Disease The Jack McGovern Coats’ Disease Foundation has established a national tissue biobank at the Wilmer Eye Institute of Johns Hopkins Medicine to facilitate research on the causes of, and most effective treatments for, Coats’ disease. This rare disorder affects the retina and has been diagnosed in children as young as four months. More. MDS Foundation Hosts Family/Caregiver Forums The MDS Foundation hosts forums at locations around the U.S. for newly diagnosed patients, long-term survivors or caregivers affected by myelodysplastic syndromes. Medical experts present information on treatment options and strategies for living with MDS. View the dates and locations. One-Day Conference Planned on Effects of Necrotizing Enterocolitis on Premature Infants and Families The Morgan Leary Vaughn Fund Inc. is hosting a one-day regional conference in Cromwell CT on June 11 on reducing the devastating effects of necrotizing enterocolitis on premature infants and their families. Online registration is open now for “Speaking of NEC: Unplugged.” Osteogenesis Imperfecta Foundation Plans Conference July 13-15 will be the dates of the biennial conference of the Osteogenesis Imperfecta Foundation. To take place in Baltimore, the program will feature forums with leading experts, practical living advice and research. Progeria Research Foundation Scientific Workshop Planned The 9th International Scientific Workshop of the Progeria Research Foundation will take place September 20-22 in Cambridge MA. This event promotes collaboration among basic and clinical scientists toward progress in progeria, cardiovascular disease and aging research. Information and registration. MOST POPULAR ARTICLES   Vertex Initiates Phase 3 of Triple Combination for Cystic Fibrosis   Sobi Recieves Positive Opinion for Anakinra in Still’s Disease   IFFGD Will Participate in Rare Disease Day to Support Rare Digestive Disease Patients   Does Michael Phelps Have Marfan Syndrome? Strategic Alliance Partnership Program > Infographics > SPECIALTY > Gaucher Disease Familial Chylomicronemia Syndrome Huntington’s Disease Cardiovascular Oncology Neurology MEDICINE > ADVOCACY > PARTNERS > CONTRIBUTORS > PUBLICATIONS > MJH Associates > AJMC CURE MD Magazine HRA ONCLive OTCGuide Pharmacy Times Specialty Pharmacy Times Targeted Oncology Resources About Advertise Careers Contact Us Terms & Conditions Copyright © RareDR 2013-2018 Rare Disease Communications. All Rights Reserved. NORD: The Voice of the Community – February 2018 FEBRUARY 20, 2018 News from NORD and its Member Organizations – February 2018 Find Out What’s Happening in Your State for Rare Disease Day On February 28th, people around the world will observe Rare Disease Day. To find out what’s happening around the U.S. and in your state, visit the national website hosted by NORD. Events are planned in state legislative buildings in more than 30 states to promote awareness of issues. In addition, special events are taking place on many university campuses and in schools and hospitals. Post your event here and read a state-by-state overview.  Join NORD in Rare Disease Day Tweetchat You are invited to a tweetchat on Rare Disease Day (Feb. 28th) hosted by NORD, The Mighty and Boston Children’s Hospital to discuss “What to do if You or Your Child Receive a Rare Disease Diagnosis.” Use hashtag #RDD18Chat. The chat runs from 1 to 2 pm ET. NORD will be live-tweeting from @RareDiseases. Co-hosts will be @TheMightySite and @BostonChildrens. Special guests will include Marsha Lanes MS, CGC, Genetic Counselor and Medical Editor on the NORD staff; Phillip L. Pearl MD, Director of Epilepsy and Clinical Neurophysiology at Boston Children’s and Ashanthi De Silva, Rare Disease Editor for The Mighty. NORD to Partner Again with The Hole in the Wall Gang Camp Applications are available for a rare disease summer family camp in Connecticut on which NORD is partnering again this year with The Hole in the Wall Gang Camp. The camp provides a special opportunity for children and families affected by rare diseases to join together for a weekend of pure fun, free of charge. Family Camp is open to 25 families who are located in the Northeast. It will take place May 31-June 3 in Ashford CT.  Apply here. Letter to Congress: NORD & Others Oppose “Right to Try” NORD and 40 other patient organizations and professional societies have sent a letter to the leadership of the U.S. House of Representatives explaining why they oppose “Right to Try” legislation currently being considered by Congress. Signers of the letter include the American Society of Clinical Oncology, Leukemia & Lymphoma Society, American Lung Association and National Health Council. The organizations say they support patients being given access to unapproved therapies but believe the bills under consideration won’t increase patient access. “The Ataxian” Documentary to be Available to Public for Download A documentary film featuring the cross-country bike ride of two young men living with Friedreich’s ataxia, “The Ataxian”, will be screened in Washington DC as part of the Rare Disease Day activities. In addition, it will be available to the public beginning Feb. 26. Kyle Bryant and Sean Baumstark and their team’s legendary bike ride across America are featured in the film. Beginning Feb. 26th, the film will be available on iTunes and other download sites. NORD Advocates for Iowa Co-pay Choice Bill NORD has been advocating for the Iowa Co-pay Choice Bill (SSB 3004). This legislation would help with rising out-of-pocket costs. Specifically, SSB 3004 gives choice and co-pay predictability to Iowa families by requiring that insurance providers offer a minimum number of plans that provide a traditional co-pay option, as opposed to co-insurance. NORD will continue to advocate for this legislation throughout February.  NORD Submits Comments to the Centers for Medicare and Medicaid Services NORD has been, and will continue to be, engaged in a number of activities to protect access to quality healthcare coverage for Medicaid beneficiaries. Most recently, NORD has submitted comments to the Centers for Medicare and Medicaid Services (CMS) regarding Kansas’ effort to implement work requirementsla and a lifetime limit in its Medicaid program. Read the comments. NEWS FROM NORD MEMBER ORGANIZATIONS Alagille Syndrome Alliance Offers Scholarship for Students With Alagille Syndrome The ALGSA is again offering the Alaina Kaitlyn Hahn Celebratory Scholarship for students with Alagille syndrome. Applications are being accepted now. The scholarship funds the education of high school graduates or GED credential recipients with ALGS who are enrolled in or entering an accredited U.S. university, college or vocational school and choose to pursue higher education in the human biological, medical or health sciences. Write to alagille[@]alagille[.]org and include AKH Scholarship in the subject line to request application materials. Abstracts Being Accepted for Cornelia de Lange Syndrome Foundation Symposium Abstracts are currently being accepted for the Cornelia de Lange Syndrome Foundation’s 8th Biennial Scientific and Education Symposium. The meeting will take place June 27-28 in Minneapolis. Attendees include physicians in various clinical disciplines, genetic counselors and research scientists.  The meeting encourages interactions between basic and clinical scientists. Alpha-1 Foundation Awards John Walsh Translational Research Award The John W. Walsh Translational Research Award has been granted to Joseph Kaserman MD, instructor of medicine at Boston University School of Medicine and a physician in Pulmonary, Allergy, Sleep and Critical Care Medicine at Boston Medical Center. The award was established in memory of John Walsh, co-founder of the foundation who dedicated his life to seeking a cure for alpha-1 antitrypsin deficiency. More. Opioid Epidemic Impacts Patients With Sarcoidosis The Foundation for Sarcoidosis Research has issued a press release about a survey on chronic pain, neuropathy and medications for sarcoidosis patients. The survey provides information related to chronic pain experienced by those living with sarcoidosis and the opioid epidemic. Read the press release. National Tissue Biobank Established for Coats Disease The Jack McGovern Coats’ Disease Foundation has established a national tissue biobank at the Wilmer Eye Institute of Johns Hopkins Medicine to facilitate research on the causes of, and most effective treatments for, Coats’ disease. This rare disorder affects the retina and has been diagnosed in children as young as four months. More. MDS Foundation Hosts Family/Caregiver Forums The MDS Foundation hosts forums at locations around the U.S. for newly diagnosed patients, long-term survivors or caregivers affected by myelodysplastic syndromes. Medical experts present information on treatment options and strategies for living with MDS. View the dates and locations. One-Day Conference Planned on Effects of Necrotizing Enterocolitis on Premature Infants and Families The Morgan Leary Vaughn Fund Inc. is hosting a one-day regional conference in Cromwell CT on June 11 on reducing the devastating effects of necrotizing enterocolitis on premature infants and their families. Online registration is open now for “Speaking of NEC: Unplugged.” Osteogenesis Imperfecta Foundation Plans Conference July 13-15 will be the dates of the biennial conference of the Osteogenesis Imperfecta Foundation. To take place in Baltimore, the program will feature forums with leading experts, practical living advice and research. Progeria Research Foundation Scientific Workshop Planned The 9th International Scientific Workshop of the Progeria Research Foundation will take place September 20-22 in Cambridge MA. This event promotes collaboration among basic and clinical scientists toward progress in progeria, cardiovascular disease and aging research. Information and registration. MOST POPULAR ARTICLES   Vertex Initiates Phase 3 of Triple Combination for Cystic Fibrosis   Sobi Recieves Positive Opinion for Anakinra in Still’s Disease   IFFGD Will Participate in Rare Disease Day to Support Rare Digestive Disease Patients   Does Michael Phelps Have Marfan Syndrome? Strategic Alliance Partnership Program > Infographics > SPECIALTY > Gaucher Disease Familial Chylomicronemia Syndrome Huntington’s Disease Cardiovascular Oncology Neurology MEDICINE > ADVOCACY > PARTNERS > CONTRIBUTORS > PUBLICATIONS > MJH Associates > AJMC CURE MD Magazine HRA ONCLive OTCGuide Pharmacy Times Specialty Pharmacy Times Targeted Oncology Resources About Advertise Careers Contact Us Terms & Conditions Copyright © RareDR 2013-2018 Rare Disease Communications. All Rights Reserved. ShareThis Copy and Paste

To the Amazing Husband Behind This Chronically Ill Wife by Samantha Moss

Behind every great man is a great woman, or so the saying goes.
Let’s flip that on its head a little. Behind this chronically ill wife is an amazing husband. A husband who has become a full-time carer. A husband who has gone beyond the call of duty. A husband who has become my legs, my cleaner, my cook, my shopper, my gardener, my driver, my nurse.

A husband who holds my hand when I’m writhing in pain. A husband who heats wheat packs in the middle of the night or makes me a cup of tea in the early hours of the morning, when sleep is completely disturbed by pain.

My husband is nothing short of amazing and I don’t know how, I don’t even want to think about how, my life would be without him by my side.

We share this chronic illness journey, warts and all. He knows me better than anyone else. He can tell when I’m exhausted even before I can. He never complains at this life that has been landed in his lap. He never gets annoyed at me for my limitations. If anything he gets annoyed at me when I try to do things beyond my limitations. That’s when I frustrate him.

It’s a frustration born out of love though. It’s because he knows how much pain I will endure for stretching my limits. He speaks to me of hating what my body is doing to me and how he feels so helpless. That breaks my heart to hear him say that.

Somehow we have managed to create a world of our own that works for us. While it is an extremely limited life, it is also a full and an ever-expanding life. Most of it is spent in the four walls of our home but we are together and we create our own adventures on a daily basis. We laugh and cry together, we read together, we watch our favorite TV shows, we sit in our garden and chat as if on a beautiful date. We share the jobs around the house and keep our environment a place where we want to be.

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We also have our alone time during the day. I have my online support forum and writing commitments and my husband always has a project on the go that he potters with in his “man cave.” Although we usually only spend two or three hours apart each day that time is precious and important, particularly for a carer.

I was recently asked to write on the topic of “Partners – Where would we be without our partners?”

I have a very simple answer to that question. Lost, lonely and in a permanent residential care facility.

Thank you, sweetheart, for all you do, your devotion, care, acceptance of our situation and your unfailing love.

Words really can’t express my love for you but I hope this article will always remind you that I think you are amazing and I love you so much.

Follow Sam’s story at My Medical Musings.

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Cardiac Sarcoidosis

The Ultimate Sarcoidosis Superpower!

My sentiments exactly. So many of us living with this disease known as Sarcoidosis, get frustrated when others don’t get our pain. Don’t understand what we go through on a daily basis. Hell, some don’t even care to understand. But yet we live in a body that is fighting our very existence to the core. Searching for cure to combat this debilitating and sometimes deadly incurable disease with very few listening is disheartening. Please Read this post written by my Warrior Sister Lisa Curry. Peace and blessings to you always reader’s.

Sarcoidosis Soldier

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I have figured out what superpower I would want if I could have one and it’s not to be able to fly, or to be invisible or, to read minds. My superpower would not be to see through walls or to have crazy strength. I would not need a special car named after me or a cape and boots or a truth lasso. The superpower I want is unique and anyone who suffers with an otherwise invisible chronic, yet life altering illness, would probably agree. I want the power to force people who doubt how I feel or question me with skepticism to live inside my skin. A little time inside this body would prove to the naysayers that life with a chronic condition like sarcoidosis is no joke. Those who doubt us would then be obligated to admit that we are actually the stronger ones, that what we experience is real…

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Fibro and Sex: pt. 1

Fibromyalgia and Sex Part 1: The Painful Truth {with video}

created by Brandi Clevinger using the image from © vgstudio at http://www.stock.adobe.com

The painful truth about sex and why it’s good for us. #fibromyalgiaCLICK TO TWEETDisclosure: I get commissions for purchases made through links in this post, but these are products I recommend and have verified and/or used.

Fibromyalgia and Sex: The Painful Truth

How can an act between two people that has been around since the beginning of time have such an effect on the way we think, feel, and react to each other?

Simply put, why does the word ‘sex’ affect our emotions in different ways?

For many, sex is simply a pleasurable activity to pursue because of the feelings it arouses and, hopefully, to achieve orgasm. Surprisingly though, only 75% of men reach orgasm during sex and a staggeringly low 29% of women reach orgasm (“10 Most Surprising Sex Statistics,” n.d.).  Even if orgasm isn’t achieved, however, this group of people do it because it feels good.

Often, significant others express their love for each other through sex because words can put restraints or boundaries on those feelings. Being intimate with a partner provides a way to connect, share, and grow together as a couple. It can be engaging, provocative, and alluring all at once. It’s no surprise sex is appealing to a large percentage of the population. In fact, the average man thinks about sex 19 times a day and the average woman thinks about sex 10 times a day (“Health Myth: Do Men Really Think About Sex Every 7 Seconds? | GQ,” n.d.).

Just as some are attracted and excited by the thought of sex, there are some that are turned off by it. Various reasons can cause these negative associations and, for those living with fibromyalgia the very mention of the word can stir up feelings of pain, discomfort, anger, or other negative thoughts. Why?

Why is sex painful for a fibro body?

Painful Touch

Sex can be a pain – literally – for a person living with fibromyalgia. Allodynia is common when dealing with fibromyalgia: when a person experiences pain from something that shouldn’t normally cause pain such as clothes, bedsheets or even air moving across the skin. Living with a sensory sensitivity causes a touch from a person to be painful no matter how gentle or caressing it’s intended to be. Allodynia prevents a person from being too close to another person making it even more difficult to have a desire for intimacy.

Pain on the Brain

No matter where pain is felt on your body, it is transmitted from the nerves to the spinal cord which is then carried to your brain. Your brain then registers the pain and causes the body to react accordingly to the pain messages received. This can be seen by quickly jerking a hand from a heat source, yelling out in pain when you stub your toe, or crying when your feelings are hurt.

With a fibro body, the sensitivity of the nerves is turned up, causing them to continuously feel pain and sending those pain signals up to the brain. The brain, in turn, concentrates on that perceived pain and coordinates the body to react to it. Since the brain is the most sensitive sex organ in the body, it makes it hard to focus on sex if our brain is constantly focused on pain.

Loss of Libido

If the negative effects of fibromyalgia on our ability to enjoy sex weren’t enough, it seems like a cruel joke that the treatment could make it even worse! Currently, there are three prescribed medications approved by the Food and Drug Administration to treat fibromyalgia: Lyrica, Cymbalta, and Savella. Antidepressants, pain relievers, muscle relaxers, antiseizure medication, and benzodiazepines have been used to ease fibromyalgia symptoms, but they are not specifically approved by the FDA for fibromyalgia.

The effectiveness of the medications as well as their side effects vary from person to person, but one of the most common side effect is the loss of libido. The reason a person’s libido is affected is because of the medicine’s effect on the production of brain chemicals. To relieve fibromyalgia symptoms, certain chemicals must be raised, in turn, lowering libido. Some of your symptoms may be relieved, but the tradeoff is your desire to have sex decreases or goes away altogether.

Muscle Pain and Stiffness

One of the most common symptoms of fibromyalgia is muscle stiffness, tenderness, and pain. Dr. Ginevra Liptan, founder of The Frida Center for Fibromyalgia located in the United States, states in her book, The FibroManual: A Complete Treatment Guide for You and Your Doctorthat the fibromyalgia brain is stuck in a stress response (Liptan, 2016, p. 20). This stress response keeps the body in a continuous state of a ‘fight or flight’ status. The ‘fight or flight’ response has our brain and sympathetic nervous system thinking it’s under attack triggering many reactions in our bodies to happen or to prevent them from happening. One of the reactions that stays on is the tension of our muscles.

Constantly tensed muscles can leave a person feeling fatigued and stiff throughout the entire body. Sex is an active exercise that requires flexibility and the use of various muscle groups. The muscle pain and stiffness can prevent a person from enjoying sex or being able to move with ease and free of pain. The results of an intimate session in the days following sex is often an increase in symptoms, or flares.

Difficulty with Sexual Performance

All the reasons listed up to this point tell why people living with fibromyalgia have little to no desire to be intimate with another person, and will, have an impact on their sexual performance. A person can feel pressure to have sex from their partner, although many times that pressure is unintentional. Thinking about pleasing and not disappointing the other person on top of struggling with the pain of having intercourse during and the days following can impact sexual performance. It’s natural to have these feelings, and they shouldn’t discourage someone living with fibromyalgia, or his/her partner, from further attempts at enjoying sex.

What are the health benefits of sex?

Even though sex may cause you or your partner pain, there are reasons you should consider having a healthy sex life. And, yes, there are ways to have a sex life and ways to improve it such as eating hormone balance food, but let’s discuss why it’s important.

Strengthens Your Relationship

As stated in the introduction, sex is a means in which many couples can express their affection for one another. When words fall short of that expression of love, we turn to intimacy and the closeness it can bring. In many instances, sex takes the relationship to a new level of connection and understanding. Communication lines open and couples can better receive what their partner’s verbal and nonverbal cues. These benefits remain even after the sex is over.

Strengthens Your Body

Yes, you read that correctly. Sex is an exercise, and like all exercises you burn calories while doing it. Pun not intended. According to research done by the University of Montreal provided by Men’s Health, men burn 100 calories for an average sex session of 25 minutes while women burn 69 calories (“Sex Workout,” n.d.).   And the longer the session, the more calories burned. Having sex also elevates your heart rate which keeps estrogen and testosterone levels in balance. Done regularly, it will decrease chances of heart disease and osteoporosis.

Eases Pain

Endorphins are the body’s natural painkillers that decrease and increase a body’s overall well-being. These feel-good brain chemicals are released through various activities such as exercising and – yep, you got it –  sex. Once endorphins are released to the pain receptors in the brain and spinal cord, they block pain signal transmissions. This lowers the perceived amount of pain for a given stimulus, and can prevent pain altogether. This is especially beneficial for someone living with fibromyalgia.

Orgasms can also relieve pain. When a body reaches its moment of climax, it releases a hormone called oxytocin which not only eases pain, but also lowers blood pressure, improves digestion, and makes us happy. Science has proven it – orgasms make a person happy!

Improves Your Sleep

In addition to the release of oxytocin, an orgasm also releases hormones called prolactin and vasopressin which are responsible for feelings of relaxation and sleepiness. With multiple hormones being released to relax the body, it’s no wonder we have the need to fall asleep after a good romp session.

Reduces Stress

Having a healthy sex life can help lower stress and improve overall well-being. Aside from the previously mentioned hormones that aid in lowering stress and improving relaxation, the physical closeness between partners during sex can also lower stress and anxiety. The welcome touching and caressing from your partner can release the body’s natural feel-good hormones which redirects your focus away from negativity and stress. This boosts self-esteem and can make a person happier.

Ways to improve sex

Even if sex is a painful experience for you, whether physically or emotionally, there are ways to make it better. There are also techniques to create a sex life if one is lacking. Sex can become a pleasurable experience that both partners look forward to.

Please join us in next month’s issue as we discuss the ways to turn painful sex into pleasurable sex in Fibromyalgia and Sex: Part 2: Turning the Pain into Pleasure.

This article first appeared in The Fibromyalgia Magazine, April 2017. Get the digital copy of the magazine from Pocketmags.

Fibro Live: Fibromyalgia and Sex

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I’m Brandi, follower of Christ, wife to an amazing, supportive husband, blessed mother to four sweet children, and a fellow spoonie.
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3 thoughts on “Fibromyalgia and Sex Part 1: The Painful Truth {with video}”

  • September 12, 2017 at 10:36 am

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    I have had these probkems and my boyfriend quit making love to me. Then he has sex with our roomate, tells me she’s pregnant and breaks up with me. Now i hace been heart broken and too afraid to be in a relationship anymore. Thank you for reading. Laura

    Reply

    • September 15, 2017 at 10:45 am

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      I’m so sorry you experienced that, Laura!

      Reply

  • September 19, 2017 at 9:50 am

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    Hi Brandy. So glad that there are a blog and site where you can read about fibro. Seeing that this is quite a new and unfamiliar illness dr struggle to identify. I am living in South Africa. My wife was diagnose for fibro 4 years ago. Believe me if I tell you that I am still struggling to come eith terms with it.
    Is there any place or group in support of the partner of a person that is struggling with it. Reason I ask is that we concentrate so much on the patient that we forget the other party as well. Seeing that this does effect both parties and this has an influence and effect on both.

    I don’t know if there are spouses esspecially husbands that are effected or struggle to come with terms. Sure as hell I still do and sonetime dont want to accept the fact that this is a life changer and I must live with it. And if my wife is not healed by Jesus Himself then I have to live with it. And this makes me sometimes upset dis organised furious ext. I feel sometime life is just unfare. Maybe we must start a blog with fibropartner. But in support of this not to de motivate a person but to boost a person in support of his or her suffering partner.

    But I have picked up, maybe I am wrong but the most people suffer from fibro is women.

    Hear from you soon.
    Blessings
    John

    Reply

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Happy Birthday Hubby 💜💜💜

20170515_230002The love of my life is celebrating his birthday today. This man has a heart of gold and a giving soul. He is the epitome of a man of The Most High, letting his light shine so that others may see The Most High in him. Those that know Karl or come in contact with him see how humble he is with the gift of music that The Most High has blessed him with. He has taught those that went on to become the best they can be in the business without expecting thank you’s or any form of recognition from them. I think of the story of Joseph when I see my husband in action. You get what I am saying? Well today I celebrate with the man that The Most High has blessed me with and celebrate his excellence.

I love you so much Karl McNeill Sr. I love you now and forever more.

Wifey