ANKLE ARTHRITIS : If I could tackle it,you too can !!-Chandan Kumar

Oh! I can’t walk for  5 minutes!! Severe pain I have been facing while walking. What should I do ??

Restricted life ,painful ankle ,disappointed life.

One of the most commonly affected joints of hemophilics - the ankle joint. Pwh easily get arthritis in ankle.

Ankle  joint is very prone to get bleeds ,and recurrent bleeds lead to synovitis and if it is not treated early,then synovitis will lead to arthritis. But don’t worry , or feel devastated if you have ankle arthritis ,you can easily over come the problem. I have ankle arthritis too ,and if  I could overcome my problem ,then anyone can too!!We just need to follow a disciplined routine and keep faith in God and ourselves.

My dearest PwHs and CwHs,

 I have ankle arthritis too ,in 2013 I too  faced the same nuisance like severe pain while walking ,frequent bleed ,but I alleviated my problems. Now I am writing here on how to overcome this menace.In same year 2013, I was diagnosed with inhibitors too ,so I couldn’t take factor 8 while bleeding and I didn’t  have access to  FEIBA .I have  overcome the problem without Factor.

So anyone out there who have ankle arthritis ,don’t worry , there is still hope to get rid of  the painful life and start your journey again.

I had been following mainly 4 steps on a regular basis.

1.       I used ANKLE FOOT ORTHOTIC(AFO) while walking. This was  suggested from CMC, Vellore.I wear this inside my  basket ball shoes. Why basketballshoes? Basically , basket ball shoe has high cushioning and great grip to hold our ankle and protect it from shock ,and AFO restrict ankle movement while walking.So  ,when you walk , ankle joint movement is restricted and we don’t face pain.In effect,it  is very similar to ankle fusion. But the ones  having 3^rd stage of arthritis may go for customized  shoes with AFO to restrict complete movement of ankle.

2.Physiotherapy :Usually PwHs get bleed while doing exercises ,and they stop the physiotherapy. But we shouldn’t stop this ,we have to understand our muscular strength and do exercises accordingly .I had started my ankle exercise from “no weight” and “5 count” only. When I didn’t get bleed for 7 days ,I had increased my count from 5 to 10 and put 250gm weight on ankle and so on. I always   ice the joint for 15 minutes after exercise. I had been using crepe bandage for the initial 3 months even at rest . Before going to  bed too, I iced my ankle for half an hour and bandage it (elastic crepe bandage) .

These where the excercies that i did,but,as we all know,the excercises must be chosen as per the condition of our joints and muscles,and need to be customised according to it.Hence,seek the advise of a physiotherapist who is well experienced in haemophilia care

3.Gulcosamine : I had  used glucosamine (1500 mg) for almost 6months.It is a food supplement Basically it helped me reduce the swelling and increase  mobility .  I continue gulcosamine ,but at a low dose.

NOTE: This is my personal experience ,please consult your doctor and physiotherapist before starting  all the above mentioned methods.

Dear friends,physiotherapy and adopting a disciplined  life style   is the only allay to alleviate our problems.

Hope this information will help many hemophilics who have been facing ankle arthritis.

For more clarification or any information you can write to me via e-mail to  chandanshallu@gmail.com.
Thanks and regards,
Chandan Kumar
Team RedLegacy

Shradhanjali : Oh loved one, my life is a tribute to you !!

Families who lost their dear ones to Hemophilia,they are  very much a part of our community.We,the global hemophilia community is a large family and the loss of the Person with Hemophilia will not and should not alienate the family from this community and the umbrella of love,care and sense of security it provides.
Even after the person with Hemophilia is no longer with us , the bond with the family should remain forever.
It is not just a name recorded in the registers that could be struck off that easily.The family is a part of us.
There are a few people who see their dear ones whom they lost in all the hemophiliacs.A few who continue their service to our community as a tribute to the dear ones whom they lost forever.
A few like Mrs Gurmeet Khanna, E. Raghunandan,Mrs. Rema Raghunandan,Mrs.Usha Parthasarathy , Vikash .C.Goyal,Ms.Prabha Pinto
RedLegacy honors such persons and families in our series Shraddhaanjali.
We introduce the series with the story of Anita Sharma,mother of Late Pankaj Sharma and Late Rohit Sharma.

Anita Sharma: Life may not be a cakewalk,face it with courage and a smile

Anita Sharma,is the women's group leader of Hemophilia Society Vishakapatanam Chapter,Andhra Pradesh,India.She lost her father when she was just 8 months old .One of her three brothers was Hemophilic and the family lost him too.She got married to Arun Sharma and relocated to Vishakapatanam . The couple were  blessed with two boys  ,the elder one,Rohit Sharma (Montoo) and the younger one, Pankaj Sharma ( Kaalu)

Montoo was diagnosed with Hemophilia with a low level of Factor VIII.She was very worried about the health and future of her child .Management of bleeds was not easy.Later ,it was found that it was a misdiagnosis and that Montoo was suffering from severe Hemophilia B, with a deficiency of Factor IX.He had a serious brain haemorrhage and they couldn't save the child. Montoo was just four when they lost him.

When Pankaj was a small kid ,he was also diagnosed with Hemophilia B and used to be in severe pain due to bleeds.One of her nephews too is Hemophilic. There was no support group for Hemophilia in the area. This led Auran Sharma to form Hemophilia Society Vishakapatanam chapter which was later affiliated to Hemophilia Federation ( India).

The Sharmas brought up Pankaj with great difficulty. There was no free factor support in India.Factor concentrates had to be bought and since they are very expensive,most of the PwHs didn't receive adequate treatment.Diagnostic and treatment facilities were also not easily accessible.They used to travel  over 500 kilometers  to reach Hyderabad for physiotherapy .
Pankaj was the gem of the family.He was everyone's beloved Kaalu. His smile and laugh were his identity.Even while he was in severe pain,he made sure  to hide it under that smile.

Pankaj was a very enthusiastic and energetic youngster. He was the leader of youth group of Vishakapatanam chapter and used to attend workshops for young hemophilics and educate the members back in his chapter about various aspects of Hemophilia.After the loss of his father just a few years back , he joined his Uncle's business.He was one of the 20 young hemophiliacs  selected from all over India for the pilot youth leadership workshop " YouLead" of Edward Kuebler,
( Director, International Step Up Reach Out programme, USA) and Mrs.Richa Mohan (President Director,Empowering Minds Society for Research & Development,India) in collaboration with Hemophilia Federation (India). He had contributed his creative inputs in designing the logo of the same.  He was very keen on collecting all information pertaining to hemophilia and sharing the same with all his friends in the community.Hemophilia being a rare condition, awareness among the medical fraternity and general public is poor.Awareness about Hemophilia was his biggest dream and aim.

YouLead Workshop

Anita Sharma supported him in all his endeavours. She was the proud mom of Pankaj.She says that the interaction with other bloodbrothers and sisters strengthened him and he motivated her to attend workshops by the women's group of HFI.
Pankaj was in the forefront in the protest against Government of  India's decision to remove Clotting Factors from the list of drugs which were exempted from customs duty in February 2016.The Indian hemophilia community succeeded in convincing the GOI to revert the decision.

The Almighty has his own plans.Leaving everyone in tears , Pankaj Sharma  succumbed to a severe abdominal bleed in March 2016.

Pankaj exists in our hearts.He is an inspiration . Pankaj continues to live through Anita Sharma. Yes, she suffered a huge loss, but she chose to continue to be a part of the Hemophilia family and provide all the service she can. She quotes these lines from a famous Bollywood movie song " Zindagi ek safar hain suhaana,yahaa kal kya ho kisne jaana "  { " Life is a wonderful journey, no one knows what  happens tomorrow "} .
Make her dearest Kaloo's dream come true : create awareness about Hemophilia , empower the youth - this is the aim of her life.

Anita Sharma continues the work initiated by Arun Sharma and Pankaj Sharma.She guides and educates her women's group regarding the various schemes and activities of WGHFI.She interacts with the women and youth and share her experience and useful information with them.She actively participates in the various beneficial activities of her chapter. A Comprehensive Hemophilia Treatment Center at Vishakapatanam is her next aim.


Compiled by :Hemant Naidu Pulijala
                         Dr.Anupama Pattiyeri
                         Team RedLegacy