Author: Joanne Corey

Please come visit my eclectic blog, Top of JC's Mind. You can never be sure what you'll find!

EDS/HSD Awareness Month

May is Ehler-Danlos Syndrome/Hypermobility Spectrum Disorder Awareness Month, begun by the Ehlers-Danlos Society to bring attention to this family of connective tissue disorders which affect millions of people around the world, many of whom will take decades to be diagnosed while others will never know for sure what causes their bodies to exhibit an unusual constellation of symptoms. I apologize for being late to the effort, although I did do one awareness post here for One-Liner Wednesday and shared some informative posts via Facebook. It’s been a bit of a rough month for me.

I am one of those people who is yet to be officially diagnosed, despite decades of symptoms, though I will spare you the details of my specific case.

The Ehlers-Danlos Society is a great resource for information about both Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD), both for individuals and for clinicians and researchers. It also plays a role in funding research around the world for these connective tissue disorders. There is a lot to know but I will just give a broad outline here.

EDS is a group of inherited connective tissue disorders, currently classified into 13 types. Twelve of the types have a known genetic cause, where a chromosome affects a particular protein, and can be identified with testing. Some of these affect less than one in a million people.

The largest group of people with EDS, though, have hypermobile EDS (hEDS), estimated to affect 3,100-5,000 people per million. While it is known to have a dominant genetic inheritance pattern, the genes or groups of genes responsible have not yet been identified. There is some question among researchers and clinicians if hEDS should remain classified as a form of EDS or if it should be considered as part of Hypermobility Spectrum Disorder in which the hypermobility is more widespread and severe than in most people with HSD.

In HSD, people exhibit joint hypermobility/instability in at least one joint, which may suffer frequent sprains, pain, subluxation/dislocation, joint or soft tissue damage, and/or early arthritis. They may also have poor proprioception, which means they can have difficulty with awareness of their bodies’ position or movement, for example, being clumsy.

They may also have symptoms over many parts/systems of their body. Fatigue, headaches, gastrointestinal problems, autonomic dysfunction, and anxiety are some of the kinds of symptoms that can be part of HSD, with each person exhibiting a different constellation of symptoms which may shift over time. This makes sense in that we have connective tissue throughout our bodies, so symptoms as diverse as unusually stretchy or delicate skin, a frequently sprained ankle, irritable bowel syndrome, and blood vessel problems can all be related through differences in the way connective tissues behave in the body. We don’t know how prevalent HSD is, because the current classification system dates from only 2017, our current medical system tends to silo various body systems into separate specialties – without there being any specialists in connective tissues – and most primary care providers haven’t been taught to recognize it. This often leaves patients in the uncomfortable position of having pieced together their own diagnosis but not being able to find a doctor willing to consider it.

I feel that it is important to be properly diagnosed, even though, as inherited conditions, EDS/HSD cannot be “cured.” It helps to know about the underlying cause in order to treat symptoms more effectively. For example, physical therapy may need to be prescribed for a longer period of time with more gentle techniques to avoid further tissue damage. Surgeries may need to be modified to better support lax connective tissue. Knowing what other symptoms may arise that are connected to EDS/HSD is also helpful, along with awareness that connective tissue disorders can help explain some disorders, such as irritable bowel syndrome, that have often been written off as idiopathic.

As EDS/HSD Awareness Month draws to a close, I’d like to thank the Ehlers-Danlos Society for their valuable work in raising awareness of these conditions, advocating for patients, disseminating information, and spearheading research into these connective tissue disorders. Maybe, as more people and, critically, more health care providers learn more about these disorders, patients will be diagnosed and treated more quickly and effectively.

I hope.

(About the photo: Doctors are taught in med school that “when you hear hoofbeats, think horses, not zebras.” However, sometimes, it is actually zebras! Zebras have come to signify EDS/HSD. My daughter T gave me this zebra unicorn pin in that spirit.)

One-Liner Wednesday: FDR on liberty and fascism

“…the liberty of a democracy is not safe if the people tolerated the growth of private power to a point where it becomes stronger than the democratic state itself. That in its essence is fascism: ownership of government by an individual, by a group, or any controlling private power.”
~~~ US President Franklin Delano Roosevelt, 1938

Join us for Linda’s One-Liner Wednesday! Find out more here: https://lindaghill.com/2025/05/28/one-liner-wednesday-best-i-can-do/

Trump corruption

Vote for Democracy #39

(Photo by Lucas Sankey on Unsplash)

Donald Trump and his family are not even trying to hide their grifting and corruption.

The two most recent public examples are the acceptance of a luxury 747 from the government of Qatar and a dinner with the top holders of a Trump meme coin.

The jet had been made for the use of Qatar’s royal family but they had been trying to sell it in recent years. Trump had seen the jet and liked it. He wanted to use it as the presidential plane while Boeing continues to construct two new planes to replace the current ones, which are almost thirty-five years old. Somehow, instead of buying it, Trump finagled it being a gift to the Defense Department that will be transferred to the Trump presidential library when he leaves office. This is an attempt to get around the emoluments clause of the US Constitution, which prohibits the president from accepting gifts from foreign countries without the consent of Congress.

Article I, Section 9, Clause 8:

No Title of Nobility shall be granted by the United States: And no Person holding any Office of Profit or Trust under them, shall, without the Consent of the Congress, accept of any present, Emolument, Office, or Title, of any kind whatever, from any King, Prince, or foreign State.

Days before being sworn in for his second term, Trump and his family launched a crypto meme coin called $Trump. The nature of crypto is lack of transparency as to who holds it but it is known that Trump and his family profit from the trading of the meme coin. Trump’s sons, Don, Jr. and Eric, announced a dinner with the President for the largest holders of $Trump, many of whom are known to be from foreign countries. The top 25 holders also had an additional reception with the President and a tour of the White House the next day. This paying for access to the president is a form of grift, influence peddling, and corruption. It’s also a further example of how Trump has used the presidency as a way to enrich himself and his family. Unlike other presidents, he has not released his tax returns to the public and has not placed his assets into a blind trust so that the public has confidence that presidential decisions are being made for the good of the country rather than personal financial gains.

In this term, Trump is also promoting policies that give advantages to his rich allies, especially Elon Musk. Musk, already a major government contractor, has increased his contracts while cutting many other contracts through DOGE, having court cases and investigations against him dismissed, having environmental regulations relaxed, and having pressure applied for other agencies and countries to accept his Starlink system.

So, yes, the United States has descended into both autocracy and oligarchy. The forces of democracy are fighting, though, and, I think, gaining momentum as the Trump administration’s actions become more lawless and blatant. While the damage has already been immense, we have to regain our democracy, values, and the rule of law before our country is lost forever. All the small actions of individuals and the larger initiatives of organizations, multiplied by millions, must prevail.

Today is observed as Memorial Day in the United States, when we honor the memory of those killed in service to our country. We owe it to their memory to do our part in upholding the democracy for which they gave their lives.

memorials

Today is the sixth anniversary of my mother’s death. I know many people who, even decades later, tell me they think of their deceased mother every day. I confess that I can’t make that claim. While I spoke to my mother nearly every day of my life, this became increasingly difficult in the last months of her life as her heart failure robbed her brain of oxygen. After her death, I had many months of flashbacks to those last difficult years, while also dealing with my father’s grief. He used to talk to and about my mother often, but, over time, his own heart failure erased the memory of her death. Toward the end, he would ask when she was coming to visit him in the skilled nursing unit and all I could say is that he would see her soon.

The photo above is of the memorials we placed at the memorial park where their cremains are inurned. I wrote this post explaining their significance when we placed them in 2022.

On Mother’s Day, I went to visit their resting place and was shocked to find that our memorials had been removed. I contacted the office, hoping that they had been placed in storage but they were just gone.

Alone in the room near my parents’ grave, I cried and told them I was sorry that these special memorials had been lost.

I think that is the only time that I have spoken aloud to my parents there.

My family has been supportive of me as I’ve dealt with the loss of these special and meaningful memorials to my parents. I’ve decided to print a photo of them and put it in a plastic frame to place on the table near their grave. That way, if it disappears, I would be able to replace it easily.

In the post linked above, I wrote about feeling more at peace when we placed the memorial. I think I had come to a place in living with loss where I could set aside the trauma of my parents’ final years and deaths and have better memories surface. I’m not sure if that is the point where I stopped thinking about my parents every day or not.

What I do know every day is that my parents gifted me not only with life but also with the foundation of who I am.

Their legacy is always with me, whether or not I bring it to consciousness.

One-Liner Wednesday: connections?

Why are there no medical specialists in connective tissue when it is what holds us together?

This burning question for EDS/HSD Awareness Month brought to you as part of Linda’s One-Liner Wednesday. Join us! Find out more here: https://lindaghill.com/2025/05/21/one-liner-wednesday-600/

One-Liner Wednesday: carrot cake

The yet-to-be-revealed dessert choice that B made for Mother’s Day was carrot cake with cream cheese icing.

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2025/05/14/one-liner-wednesday-one-of-two/

Mother’s Day 2025

This photo from almost eight years ago is three generations of mothers in my family, Nana and me with daughter E holding baby ABC, my first grandchild and Nana’s first great-gandchild.

This Mother’s Day is without Nana, who passed away in May 2019, and with E and ABC living in London, where Mother’s Day was celebrated a couple of months ago.

Here, B baked squash maple muffins for breakfast and is planning a special dinner, chicken and artichokes over artichoke ravioli with a yet-to-be-revealed-to me dessert. Daughter T is here with us, which is a blessing.

Still, if feels strange to not be with any of the other mothers in my family, except in spirit.

I am wearing a shirt that was my mother’s, a gift from our friend Angie, who passed away twenty years ago.

Mother’s Day began as a call for peace. (That post contains Julia Ward Howe’s original proclamation, still well worth reading in our current war-torn world.) Today, I wish peace to all, especially to all who have mothered others, whether still living or deceased.

Love and compassion bring peace.

One-Liner Wednesday: my new yard sign

Our new yard sign to send the message to preserve our health programs in the United States.

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2025/05/07/one-liner-wednesday-this-wont-do/

Pope Francis

(Image by manfred Kindlinger from Pixabay)

Before the conclave to choose his successor begins, I want to take a moment to write about Pope Francis, who died on Easter Monday after twelve years as pope.

From the moment that he was announced after his election with the name Francis, I knew he would be a different kind of pope than his immediate predecessors, especially when he asked the people to bless him before he blessed them. Like St. Francis of Assisi, Pope Francis dedicated himself to peace, to serving all people, especially the most vulnerable, and to caring for creation. I appreciate how he led the church in those directions while also offering his message to the whole world.

Within the church, he opened the door to greater listening and dialogue, especially through the synodal process that included the laity as well as clergy. This was especially meaningful to me as John Paul II and Benedict XVI tended to shut down discussion and silence voices that offered a different viewpoint. Francis also engaged with people of other faiths and philosophies around the world, travelling broadly and meeting with people in many different circumstances. He would even acknowledge that when he would ask people to bless him or pray for him by asking people who did not have a prayer tradition to offer their well wishes on his behalf.

I appreciated Francis’s humility in choosing to live simply in Casa Santa Marta rather than the opulent papal apartment. He dressed simply and liked to be out among the people. Even his funeral showed his humility. He simplified the papal rite so that it was recognizable to anyone that has planned a Catholic funeral. Only the final commendation and funeral procession through Rome stood out as being papal in scope. One of the most moving moments was when his body arrived for burial at the Basilica of Santa Maria Maggiore, where he was greeted by the poor of Rome and children carried baskets of flowers to place before the altar. The inscription for his grave reads simply Franciscus.

As an environmentalist, my favorite writing of Pope Francis’s is his first encyclical, Laudato Si’, which called for everyone in the world to care for our common home, the earth, and for other people, especially the most vulnerable. It was important in securing the Paris Accord and remains, along with its companion, Laudate Deum, a continuing challenge to how we address the climate crisis and social inequities.

As a feminist and progressive Catholic, I appreciate that Francis invited discussion of women’s role in the Church and appointed women to positions of authority they had never before occupied. However, it was disappointing that he could not see the full vocation of women in church and society. Still, we are further along the path toward the radical inclusion that Jesus modeled for us than we were and for that I am grateful.

Like many Catholics, I will be watching for the white smoke to rise from the Sistine Chapel where the cardinals will meet to select the next pope. The name he chooses may give us a window into the direction in which he will lead the church. For example, a John XXIV would continue in the direction of Vatican II and Francis’s synodality while a Benedict XVII would likely call for a “smaller, purer Church” that would exclude people like me.

The word catholic means universal. Pope Francis spoke to that sense of universality which I hope the next pope will continue.

In a small group a few days ago, we were invited to pray that the next pope be a woman who would take the name Clare and continue in the mode of St. Francis of Assisi and St. Clare. The Holy Spirit would have to blow through the conclave with hurricane force for that prayer to be fulfilled, but, maybe, some day?

Only God knows.

May the fourth

The overhead warning signs on Route 17/86 near Binghamton, New York flashed this message:

Slow down you must.
Arrive safely you will.

They were channeling Yoda because today is May the fourth, the tongue-in-cheek day to celebrate the Stars Wars franchise because the dialogue sometimes included the phrase, “May the force be with you.”

I thought I should provide the explanation because some readers would have no context on this, due to their generation, cultural background, or obliviousness to Star Wars. 😉

(Image by martin from Pixabay)