XDP Dystonia Philippines

Thank you very much V De Leon
( https://www.facebook.com/vnzkddo )

At times like this, it can be difficult to find the perfect words. In the days ahead, may you find serenity, comfort, and all the love you require.

Our Condolences to the bereaved family
Love & Prayers

Marlon Furton
06/04/2023

I am Adrian Dela Cruz from Janiuay, Iloilo. I have this condition called XDP which means sex-Linked dystonia with parkinsonisn. It is a neuro progressive degenerative disease. I can't help but cry since I cannot control my body. I have pain everywhere in my body. For now these involuntary movements is not helping me. I am very tired that it has eaten my strength to the point that I can no longer live normally. It eats my body too. I am now losing weight. I am afraid that it will kill me sooner because I can't sleep well too. Just imagine of non-stop movement for 22 hours a day. I know that there is no cure yet of my condition but there is treatment and medications.

I am here asking your kind heart that even for my medications and vitamins would be of great help. That even just goodnight sleep, I can have, that even just a little rest from the involuntary movement. I know that there is God in this world and He will repay you in fold times that I cannot.

P.S.
For those who are willing to share their blessings just message him 👇👇👇
https://www.facebook.com/pamelabloosom?mibextid=ZbWKwL
CP # (+63)
0930 852 7281

Send a message to learn more

Announcenment for confirmed XDP only ( Those who have family member who has Lubag symptoms, underwent physical examination from a neurologist or have undergone MRI and revealed XDP result, in some cases XDP is not shown in the MRI result, we listen to a neurological assessment.

The Sunshine Care Foundation helps the XDP community in Western Visayas and part of their project is to reach XDP patients in NCR/Luzon. To know more about Sunshine Care Foundation, please visit their website:
https://sunshinecarefoundation.org

You may also contact their Patient Services at:

https://www.facebook.com/scf.phils?mibextid=LQQJ4d

Thank you.

Home - Sunshine Care Foundation Join innovators from around the world for a 6-week virtual hackathon to create solutions for XDP. Increase public awareness of the disease. Help us engage with communities at risk. Develop strategies to better connect patient families to their medical team, to their caregivers, and to each other.

GOOD AFTERNOON,
baka may nangangailangan po sa inyo ng medical supplies, balak ko pong idonate ang mga medical supplies na stock namen dito sa bahay, pm nalang po ang may gusto ako po ay manghihingi ng 500pesos para sa shipping fee (nueva ecija po mangagaling pm nalang po kayo ang mga susumunod ay available pa

10pcs F16 foley cathether
40pcs suction cathether
5 pcs urine bag
50pcs ngt good for 2 weeks

MERRY CHRISTMASS ☺️☺️☺️

Credit to the Dystonia Europe

What do you do to ? Monika from Sweden likes to be creative. One of her many hobbies includes needlepoint, it takes her mind off her cervical dystonia.

We remember and offer prayers for our XDP brothers who passed away.

Credit to the Dystonia Europe

Sometimes it feels like no one understands what we're going through. That might be right... But we have to remember that our loved ones are most likely trying their best, and it can be really hard to understand or relate to something one has not lived through.

Father, we humbly approach your throne of grace and mercy today to request that You touch the lives of those who are struggling, battling and fighting with what we cannot even begin to comprehend. Illnesses and diseases, depression and anxiety. Father, we rebuke them in Your mighty name, we curse it out!
Be their guide. Be their comforter. Lord, please draw near. Wrap them in Your warm loving arms as we pray that they don’t give up.

They will cling to You and feel Your strength and mighty power as it infiltrates their minds, bodies and souls and emerge from the darkness, victorious, as they mount up on wings as the eagles.
They will soar high and as they do, they praise Your Holy name. Father, be that little glimmer of hope that they would keep hanging on to.

We pray that whatever they are struggling with will vanish. They will be over-comers, In Jesus’ Mighty Name, Amen!

Sir Ronald De Leon. you are gone but your memories will never be forgotten. Rest in paradise. naiwan mong legacy para sa kapwa mo XDP, Maraming salamat sir Ronald di ka namin makakalimutan. Our heartfelt
condolences to the family,

September is Dystonia Awareness Month. Credit to Mario Prado and his angels for this graphics.

Credit to Dapat Alam Mo- GMA Network https://fb.watch/fivPeCVRaa/

Credit to the Dystonia Europe

Dystonia is… a neurological movement disorder. It is the 3rd most common movement disorder after Parkinson's and Essential Tremor and can affect any part of the body. It is caused by incorrect signals from the brain resulting in involuntary, often painful muscle contractions. There is no cure, but plenty of treatment options. Dystonia is a chronic, lifelong condition, estimated
to affect over 3 million people worldwide. Join the cause! Like, share, comment, and subscribe. Every little action helps raise awareness!!!

Pakibasa ng mabuti po! Para lang po sa XDP Luzon, sana po nagkaka-intindihan tayo at XDP patient lang po 👌
😉PS. Ung mga patient na nakabigay na ng infos sa mga group chat wag na po kayong mag fill up please. 👌

Patient Complete Name:
Location:
Contact #:
No. of males in your family:

Pls. send your infos to sir Bert

https://www.facebook.com/adelbert.mendoza.5

SSpic: CTTO

Credit to the Dystonia Europe

Deep brain stimulation (DBS) is a surgical procedure in which two thin, insulated electrodes are inserted into the brain. These electrodes are then connected by a wire under the skin to a battery usually implanted in the chest or in the abdomen. The battery operates similarly to a pacemaker delivering targeted electrical pulses that block the signals that cause the symptoms of dystonia. The battery is implanted below the skin on the chest wall (or sometimes the lower abdominal wall) so it is barely visible but an outline of its shape and of the wires connecting it to the brain may be visible.

The carefully controlled, minute electrical currents delivered through the electrodes on both sides of the brain can have a beneficial effect on the involuntary muscle contractions caused by dystonia. As a result, the symptoms of dystonia such as abnormal movements and postures and/or dystonic tremor can be eased. In addition, DBS can reduce the pain caused by dystonia.

The electrodes are usually implanted into an area known as the Globus Pallidus Interna (GPi). Stimulation of this area is known as pallidal stimulation.

Deep brain stimulation works most effectively for people who have an inherited (genetic) form of dystonia or for those where the dystonia has no identified cause (this is called idiopathic). The treatment is provided for those with inherited or idiopathic dystonia who have a severe generalised dystonia, neck (cervical) dystonia or dystonic tremor when other treatment options (such as botulinum toxin injections and oral medications) have failed to provide adequate relief.

A rigorous patient assessment, selection and deselection process is carried out prior to the operation. In addition to the type of dystonia, a number of other factors are taken into account – for instance DBS may not be suitable where there is also a diagnosis of severe depression because of the risk that DBS may make the depression worse.

For more information about the DBS surgery, visit the website.

A tremor involves involuntary and uncontrolled muscle oscillations in one or more parts of the body—most typically the hands, arms, head, face, voice, abdomen, or legs.

Credit to the Dystonia Medical Research Foundation

Living well with dystonia often requires adhering to complex treatment regimens, ongoing medical appointments, and careful self-monitoring of symptoms and response to treatment.

Having a multi-level support system can help you feel and function at your best. Social support in particular leads to overall improved quality of life.

Tips for building a multi-level support system visit are available at: https://dystonia-foundation.org/building-support-system/

Share this to your friends so that they will be enlightened.

If a genetic disorder runs in my family, what are the chances that my children will have the condition?: MedlinePlus Genetics It is hard to predict if your children will inherit a genetic disorder. Learn about the factors that impact the chances of developing a genetic condition.

Dystonia is a disorder that disrupts the body’s ability to move normally. It may come as a surprise to many that there is a subspecialty of medical doctors who have dedicated their careers to caring for people with movement disorders and researching these specific neurological problems.

A movement disorder specialist (MDS) is a neurologist with intensive training and experience specifically in movement disorders, including dystonia. Seeing an MDS is an important step for individuals seeking a diagnosis for involuntary movement symptoms and/or individuals diagnosed with dystonia. DMRF can help locate specialists in the US. Learn more: https://dystonia-foundation.org/living-dystonia/what-is-movement-disorder/

Ma'am Rowena Guanzon , maraming Salamat in advance from XDP community!

Maganda po ang plano niyo Sec. Erwin Tulfo. Marami po tayong mga kababayan ang nangangailangan ng tulong.

Good Day Everyone!

We are humbly asking for help, financially and in words of prayers for our friend Celso Sion Robes.

We know most of us are also struggling financially, but we are knocking in your kind hearts for your kind help and prayers through this tough times. Your generosity will be a big help to Mang Celso, he was diagnosed with a rare disorder called X-Linked Dystonia Parkinsonism (XDP).

X-Linked Dystonia Parkinsonism (XDP), also known as Lubag Syndrome or X-linked Dystonia of Panay, is a rare x-linked progressive movement disorder with high penetrance found almost exclusively in males from Panay, Philippines. It is characterized by dystonic movements first typically occurring in the 3rd and 4th decade of life. The dystonic movements often either co-
exist or develop into parkinsonism within 10 years of disease onset.

Thank you so much and may our Almighty Father return the blessings you share hundredfold. God bless you and advance Happy Father's Day.

Those willing to share their Blessings just message him
https://www.facebook.com/celsosion.robes
Contact # 09100721212


Number: 09499536781
Name: John Carlo Robes

P. S. We are asking for his Magnetic Resonance Imaging fee because it is needed for his SSS requirements. He belongs to an indigent family.

Mr Efren is an educator in the Philippines, teaching high school students and vocational-technological classes for all ages, mostly for kids who can't afford college yet but willing to learn new skills and also a Youth advocator. He is also an avid motorcycle enthusiast prior to his health condition.

The first symptoms started way back December 2017, when he crashed in his motorcycle while about to attend a Seminar Training. His neck tilted to the left side and experienced focal seizures. On 2018 he then experienced knee pains when walking. He's only 32 years old when these symptoms first appeared. His neck continued to twist to the left so he undergone an MRI test but the results, shockingly, are all within normal.

On 2020, his symptoms become more apparent and the pain in his knees and feet worsens. He also experiences extreme back pains and neck pains. And because of the lockdown during the pandemic, we weren't able to go for a doctor's check-up.

Luckily this 2021, a Neurologist is now available here in our small-town province, so we were able to see the doctor. It is then that we found out that he have a rare disease called X-LINKED DYSTONIA PARKINSONISM causing the extremely painful symptoms, involuntary muscle movements and weakness. This rare disease mostly affects men.

As of now he has three Botulinum Injection (Botox) as part of the treatment but he needs to undergo Deep Brain Stimulation Surgery (DBS) to help lessen the tremors and pains. This operations can also help him to ultimately return back to his health condition before the onset of the disease, but this operations approximately costs 2.5 million Philippine peso or approximately $50,000 USD.

Because of this, we heartfully knock on your kind hearts for any amount you can spare for Sir Efren's surgery.

May the Almighty God bless us all.

Deep Brain Surgery for X-Linked Dystonia Parkinsonism of Sir Efren Gayanes Mr Efren is an educator in the Philippines, teaching high school students and vocational-technological classes for all ages, mostly for kids who can’t afford college yet but willing to learn new skills and also a Youth advocator. He is also an avid motorcycle enthusiast prior to his health con

Kami po ay kumakatok sa inyong mga puso😇🙏🏻

 po for Bernard Garing, kahit piso po sobrang laki na kapag naipon pambili lang po ng gamot niya
(Akidin, rivotril and celecoxib)

MARAMING SALAMAT PO!
# 09054391514
: Bernard Garing

His Video Link:
https://www.facebook.com/1141038462574581/posts/4957849404226782/

Please share this post👇👇👇

According to the Holy Bible in Acts 20:35, it says "It is more blessed to give than to receive.

He is Synel Mirasol Ramirez, 34 years old, a resident of Area 7 Brgy. Poblacion, Aroroy, Masbate. He has been afflicted since 2016 by X- Linked Dystonia Parkinsonism (XDP), a neuro-degenerative disease found in the Philippines. Because of lack of check up his symptoms progressed like walking problem, swallowing difficulty, speech impediment, and blepharospasm. He lost his job because of the disease. His last check up was year 2018. A friend who shares the same feeling and understands his situation because she has brothers who were also diagnosed as XDP helped him to have a teleconsult with a neurologist last January 11, 2022.

He is asking for the benevolent persons to share monetary aid for his oral medications. A neurologist pledged for his Magnetic Resonance Imaging (MRI) procedure which is needed as a requirement for his SSS pension. He is begging for his fare and accommodation so that he can go to Manila.

He may not reciprocate the blessings you will give to him, but the Lord above knows how to return the favor.

You can send your financial help thru Palawan Pawnshop. You can reach him at 09467006943 or 09389956377.

His Facebook account https://www.facebook.com/synelmirasol.ramirez

P.S.
Number: 09389956377
Name: Synel Mirasol Ramirez

Video link: https://www.facebook.com/1141038462574581/posts/4963471986997857/

Please share👇👇👇

Proverbs 11:25 - A generous person will prosper, whoever refreshes others will be refreshed. He is A***n Dorio Delamide, 48 years old. He lives in Blk. 19 Lot 10 Kalayaan Avenue Brgy. 201 Pasay City. He was diagnosed with a neurodegenerative disorder called X-Linked Dystonia Parkinsonism in 2020. His symptoms include drooping eyelids/ blepharospasm, difficulty in breathing and standing, and speech and swallowing problems. He was a driver of expat family before he was stricken by a genetic disease. He used to be the provider of the family. The whole family is affected especially his four children. His wife has no stable source of living.

He is asking for persons with generous hearts to share their blessing for his check up fee and oral medicines. You can send your financial aid thru Gcash. You can reach him @ 0956873079, his facebook account
https://www.facebook.com/adelamide. Thank you so much.

May our Almighty Father return the blessings you share a hundredfold. Godbless and Merry Christmas!


Number:09568730792
Name: Arlan Delamide

Please share👇👇👇👇